Sunday, March 31, 2013

This year, my basket is overflowing with emptiness and sorrow

Today sucked.  Wow, I mean it really sucked.  My in-laws, who spent the later part of the day with us, saved us on this terrible day and we are so glad they came to feed us and keep us company.  But there wasn't anything that could really fix today. I just wasn't ready for this.  I don't know why I didn't think it would be so hard?  I guess because we survived Christmas I thought nothing else could be that bad, but... oh yeah... a holiday where a bunny comes to deliver oodles of candy - Ty's favorite thing in the whole entire world - was not at all easy.  It was such a long, painful day, it feels like I've been awake for two days straight.  Trying to make pretend things are okay on Easter, when everything in our world is not okay was simply painful and exhausting. 

It started with the minute we all got out of bed.  Yay, the Easter Bunny came!  But there was nothing exciting about it for me and Lou.  We put on a good show for Gavin, but all we could do was think about last year, and look at Gavin's one lonely Easter Basket with nothing but void. The obvious absence weighed on us so heavily, we barely even spoke for hours other than to respond to Gavin in a fake, high-pitched, excitable voice. 

Last year, we escaped from the hospital for Easter.  We came home late the night before, but we were still H-O-M-E and that was all that mattered.  We weren't prepared for our new life with Ty being so disabled, it was the first time he was home after suffering full-body paralysis as a result of radiation necrosis, but we knew we would be checking into a rehab facility in a few days and we just had to take him home.  It was the only thing that would make him happy, and it really worked.  After over a month of suffering, and weeks in the hospital where he fell paralysed for reasons his little mind could never comprehend, here he is on Easter morning, rocking his awesome hair with smiles from ear to ear.  He was simply amazing. 


At the end of the day today, Lou and I watched all of our videos from last Easter, and Ty was genuinely excited about the egg hunt, the basket, everything.  He always had such an incredible spirit, and such a will to enjoy life no matter what.  Last year I set out four beautiful baskets for Lou, Mely, Ty and Gavin.  This year we had only one.  Our family felt so beat up and broken today. 

Last night we talked about how different Ty and Gavin are.  How Gavin is just so into his legos and imaginary play, we actually have to work at getting him excited for things like the Easter bunny, whereas this is the stuff Ty lived for.  He LOVED holidays.  We debated on whether we should leave a note or a treat for the Easter Bunny and joked about how Ty would have definitely left him a note, and some carrots, and some candy, and whatever else he could think of.  He would have been looking for bunny footprints and other signs the bunny paid us a visit before the sun was even up.  Gavin woke up today and didn't even remember it was Easter morning until we reminded him.  After he saw some miniature super heroes in his basket, he lost all interest in the egg hunt and just wanted to play with his toys.  He sat and played in his own little super hero world for HOURS while Lou and I moped in sadness. 

Lou and I both spent a lot of quiet time with Ty today.  Lou sat on the couch and looked at pictures for hours.  I went outside for a very long time and walked around the yard talking out loud to Ty in between my sobs.  I was saying the words to the book "We're going on a bear hunt" like I used to do as I carried him through the yard.  I spent time at his tree, talking to him about how it will soon be covered with beautiful red leaves.  I sat on his playset where we used to eat snacks every day when living in Long Beach and I imagined him there at two and a half years old, eating goldfish and climbing on everything.  I looked to see that the tulips we planted together were coming up (they are) and I sat on the bench where we last sat outside together.  When he whispered to me that he likes the red leaves.  Then I sat on the steps in our backyard and listened to all the birds as I cried with my head in my lap.  After what felt like hours, I heard a woodpecker and it made me smile.  I turned my attention to God and had a heart-to-heart for a long time.  Today is obviously a day to reflect on how his son suffered, so I had a lot to say about that.  Despite all I have seen Ty suffer through, I am eternally grateful.  I can't express this enough.  As I say all the time, Ty Campbell was my greatest gift.  I have only God to thank for him, and my gratitude is higher than the mountains, taller than the trees, swifter than the wind.  And Easter is a most special day because I know that I will be with Ty again in eternity. 

I started cleaning up and setting the table after I came inside, still lost in a foggy cloud of longing, when Gavin came running into the kitchen. 
"Mommy!  I saw a little ladybug!"
"A real one?"
"Show me!" 

If I didn't have the pictures to prove it, I think some of you might start to think I make this stuff up, right?  Well, pictures don't lie, we really had yet another ladybug visit at just the right time.  Gavin - aka BatGavin - pulled me into the room and showed her to me.  There she was, our beautiful ladybug sent by Ty to tell us that he is okay.  I never, ever used to see ladybugs before we lost Ty, I swear.

She is on the windowsill behind him

I also want to tell you all that I don't think YOU are crazy, either, when you tell me that you see a ladybug from Ty. Even if you've never met him (or any of us for that matter). I promise you, when you carry him in your heart you will see him everywhere.  It helps me so much to know that he is all around you, because it is a pretty awesome feeling knowing we are all so closely connected through love if we allow it.   

Saturday, March 30, 2013

Dealing with Loss at 4 Years Old

Poor Gavin got so sick last night.  We went out to dinner, I was wearing a new dress (which is a big deal, it has been a long time since I made an effort like that to have a nice night out with family).  I don’t know if it was something he ate, or just a parasite of some sort since he can’t stop himself from sitting on the floor everywhere and touching everything, but Gavin ended up with a terrible stomach ache by the end of the night.  While he was on the potty, he also vomited all over me and the new dress.  Sigh.  Story of my life.  Wish I was exaggerating. 

As I laid down in bed with him, face to face, I became overwhelmed by the sickness in his breath and I couldn’t stop the tears.  It is a smell that I miss from those same nights with Ty, which were obviously much more frequent for so many reasons.  Of course I used to love it more when my Ty went to bed smelling like milk and honey, but I swear I didn’t mind the smell of his breath after he got sick, either.  As we lay there, falling asleep snuggled so close, I instead used to focus on the warmth of his breath in my face, and the rhythmic in-and-out that told me all night he was okay. 

I blatantly stared at a women applying sunblock to her teenage daughter’s shoulders today and I watched with such envy.  It was such a simple and loving act.  I wished Ty would grow bigger so I could lovingly take my hands and smooth it over his warm, broad shoulders like that.  Kiss the little radiation tattoo on the back of his neck as I do it.  I have been trying so hard to see Ty everywhere.  So when I was putting lotion on Gavin after his tubby tonight, all I could imagine was Ty’s arm instead.  His big boy arms were so different than Gavin’s are now.  Sadly, they grew to be so much whiter, so much softer, long, skinny and with such low muscle tone.  There was a scar right in the crease of his elbow where his PICC line was once placed (before he ripped it out) and I thought about his hands.  I don’t ever, ever want to forget the slightest details of his hands.
Then Lou put him to bed to say prayers, and I decided to lay down with them for a change.  I listened as they did a very similar routine to the one he used to have with Ty, although Ty was much softer spoken, he was also more attentive and cooperative.  Still, Gavin made me so proud during his prayers.  He always remembers to pray for Ty first, and for Mely.  He knows who his family is.  He was a little disruptive during the basics (Our Father, Hail Mary, Glory Be) but he did do it.  I remember listening to Ty say those same prayers and I promise you I heard his little voice saying those prayers right alongside us tonight.  I love having Gavin take Ty’s place in our bed.  It is so special to me now.  He can be so restless, whereas Ty was too disabled to disrupt our sleep by moving around much, but I welcome the kicks and the upside-down maneuvers from his brother.  Just knowing he is there helps me sleep better each night and keeps me from crying in the darkness.
I thank God every day for Gavin.  He is the reason why I can stop myself from crying in the darkness.  Because I remember how much I love him, too, and I am able to be strong for him.  The pain is there, it doesn’t go anywhere, but Gavin gives me the strength to accept the pain a little better and he puts genuine, happy smiles on my face. 

He’s been talking about his brother quite a bit lately.  Today, he was making pretend he had a pile of imaginary candy.  He told me he wanted to give it to Ty, but if Ty takes it up to heaven it will disappear in the stars and then there will be no more candy.  He thought that would be funny; but I’m still very unsure about how he imagines heaven to be like.  Then later today, out of nowhere, he told me, “me and Ty are kids and we can do kids stuff!”  I agreed with him and I told him I wish Ty was here to do all that fun kids stuff with him.  He whined a little, “yeah, I need TY to BE HERE so we can play together!  He needs to come down from heaven!”  That always makes me so sad.  All I can do is agree with him.  So when I looked up, I saw a few really nice bright stars in the sky.  “Gavin, look, there’s Ty telling us that he IS always here with us.  Which star do you think he is sending us tonight? Huh?  Which star do you think Ty is sitting on?”
“None of them…” he answered sadly.
“How come none of them?”
“Because none of them are sparkley enough for Ty.  None of them are bright enough.”

What a good boy and what a perfect answer.  He is the strongest one out of all of us.  The other night he was crying and a stranger approached him to try and cheer him up.  I was so impressed when he said in his adorable baby voice, “I have a brother, Ty, but he went to heaven.”  The man responded with an apologetic nod and an “ohhhh.”  I guess Gavin wasn’t sure if he understood so he said it even louder “My brother is in heaven!”  The man seemed to understand very well if you ask me.  He told Gavin it was okay.  He gave Gavin a small gift and one for Ty in heaven. 

Clearly, I’ve been emotional lately.  We are just heading home from a few days away in celebration of my parent’s 50th wedding anniversary – can you believe that!?  They are my role models.  We had some wonderful family time together, and Gavin had so much fun with his cousins.  It was hard not having Ty with us, but I imagined him to be jumping about on the rocks and looking for seashells with the boys.  Every night I looked for him in the stars, and he was always there. 

Tuesday, March 26, 2013

I have fat arms!

It’s true.  They are totally fat.  I just came to that realization.  I know it sounds ridiculous and vain, but the significance of my fat arms, what it all represents, is what brings me to talk about it here. 

I was feeling warm in my sweater today, and when I took it off to cool down in my tee shirt, I noticed how incredibly soft and chubby my arms have gotten.  I can’t even explain how sad that makes me on so many levels.  It’s natural for most people to feel disappointed when their pants feel too tight, or when they’ve gained weight, but for me it is more than that.  It makes me sad because I haven’t taken care of myself by eating well or exercising in months on top of months.  Yesterday I worked so late at the foundation, dinner was from Ty’s candy cart!  But the much more significant reason why my fat arms are beyond depressing is because they were never this fat in the five years that I was lucky enough to carry Ty on my hip.  Not that I was eating healthier when Ty was sick – I fed my cancer mom nerves on coffee, chocolate and wine for more than two years – but because my arms were never empty.  I carried my precious boy with me everywhere I went.  We were never, ever apart and I am not exaggerating.  I didn’t go to the gym.  I didn’t get my nails done.  I didn’t even go to the supermarket alone no matter how disabled he was.  If I was going somewhere, he was coming with me.  I carried him with me and I wouldn’t have it any other way.  We were inseparable. 

Right where he belongs <3

As he grew heavier, I became so strong and I truly had the muscles to prove it.  I was always shocked at how strong I was when I caught a glimpse in the mirror – I practically had Madonna arms!  All that my soft chubby arms tell me now is that it has been waaaaay too long that these arms of mine have been empty.  Long enough for my muscles to dissipate and my skin to sag.  Is this for real?  As funny as it sounds, I feel betrayed by my own body.  In only five months, my arms already look like this?  How quickly they’ve forgotten about Ty. 

Old-looking fat arms are generally a depressing realization for any woman, am I right?  But for me, noticing the reality of my new, fat arms is even worse because of what they signify.  If Ty were still here, like he’s supposed to be, my arms would still be rock solid and my heart would be overflowing.  I would be way too busy carrying Ty around to sit at the table with Gavin and eat Oreos with milk like we do now.  I never had time for such a luxury when Ty was around!  No way!   I catered to him, didn’t worry about myself, and I was happy to do it.  I swear. 

They say that when a person loses a limb, like an arm or a leg, they experience something called “phantom pain” where they believe they are still feeling physical pain in the arm or leg that is no longer there.   Well, I can honestly say that my shoulders are killing me and I’m dragging my feet, too.  My pain is not just emotional, it is physical, too.  I feel like I’m falling apart.  I have no energy to do the things I want to do.  I believe it is phantom pain.  I am feeling the physical pain that I would and should be feeling if I was carrying Ty around all day. 

Reminders of Ty find us everywhere.  My mom says that she has a backyard filled with blue jays and cardinals this year – she never had that before.  We have heard and spotted a woodpecker at our house 3 out of the past 4 days, always in the morning.  I love that because our last couple of weeks in the oxygen chamber, just weeks before we ended up on hospice care, our wonderful and loving nurse would tell Ty stories about her woodpecker that keeps waking her up in the morning.  He always smiled, but he never had the chance to see a woodpecker in his life.  I’m glad we have one in our tree now and I like to think Ty is right next to me and Gavin, watching it and giggling with us as I know he would have. 

My mom and I took a walk tonight and she asked me how I’m doing.  I held back the tears pretty well, but I can’t lie to my mom.  I’m not great, but I am okay I guess.  I can’t change things so I’m doing my best with what I have, but it’s still hard to live knowing that we couldn’t save him.  We all worked so hard and tried with every ounce of our beings, and he’s still gone.  It has left me changed forever in so many ways.  I’ve lost my innocence about life in general.  I used to believe you can have anything you dream of if you just try hard enough.  I used to believe life was so beautiful and FUN!  I was passionate about life in general.  Now I think everything is bittersweet.  The world around me is still so very beautiful, but Ty will never enjoy these things again.  And I am not alone in thinking this way.  Life is so hard and as we get older I know more and more good and kind people who have tragic, unfair stories about loss, heartache and struggles.

I have received so many wonderful letters and comments from people who were moved by a recent post; where I talked about how people choose to live with blinders on rather than fall in love with these kids and support the cause.  It’s too painful of a reality to face for so many people, and they don’t want to share in my pain (or that of others).  I do believe that such avoidance also keeps them from experiencing a greater appreciation of love and beauty and all things happy.  When you open yourself up to sadness, you also allow yourself a greater understanding of happiness. Thank you to all of those that reached out to share stories of how they are changed by Ty and will never turn away. 

If you are wondering where I’ve been for a week, I’ve been sooo busy!  I’ve been happily distracted by some very exciting things at the foundation.  First off, we have so many exciting fundraisers planned for the foundation, including a Horse Ride in Carmel for Ty on May 5, a Bouncy House Star Wars party (also in May), a fundraiser/auction in Dallas on May 17, a Motorcycle Ride for Ty in Brewster/Patterson/Pawling on June 1 with a huge auction, and we have received approval to host our first “Ty-Athlon” tri around Lake Mahopac this fall.  We have had some incredible individuals who are raising money for their athletic achievements AND we have an exciting line of children’s apparel aligned with Nickelodeon star Cymphonique that we will be launching very soon!!  Finally, on top of all that, we are counting down the days to launch the Muddy Puddles Project (we are aiming for MONDAY, APRIL 1!!).  Fingers crossed that we can get some media attention around the launch :)  All of this hard work is truly paying off.  I have an incredible team of volunteers and interns, near and far, who are making magic at the TLC Foundation.  I truly feel blessed and lucky despite the pain in my heart.  

CLICK HERE for a quick video of Ty shooting silly string.  In my arms, of course.  His giggle at the end makes my heart hurt. 

Tuesday, March 19, 2013

Salty Sandwiches

I swear I have had some good days (all things considered), but the past two days have been very, very heavy.  The opposite of good.  I have been so slow and my eyelids feel like they are kept open with toothpicks.  I haven't worn any makeup for days.  I look old and run-down.  That's because that is exactly how I feel.  Sad, lonely and ugly, to be honest.  Lou has been in the same funk, too.  We are just missing his blue lollipops and his soft, sweet laughter. 


It was a miserable day in general because of all the snow.  I had a chill to the bone all afternoon.  I did accomplish getting Gavin a haircut at Aunt Lizzie's house, but the temper tantrum that ensued when it was time to leave was almost unbearable.  Thankfully, I managed to hold it in all day until Lou took Gavin upstairs for bed.  I started making our turkey sandwiches for lunch tomorrow (one for Gavin and one for me) and suddenly buckets of tears were just falling from my face and into the mayonnaise as I was spreading.   I hope when I bite into my sandwich tomorrow I don't come across that all too familiar taste of salty teardrops. 

Gavin, on the other hand, has been very excitable for days on end.  So much so that I brought a glass of wine with me into the bathroom for tubby time yesterday because I was losing my patience with him and I needed to calm down before losing it on him.  He has a lot of energy and it's not fair that I am too sad to embrace his antics and have fun with him sometimes. 

Some days I put on a very good show for him.  I wear superhero costumes to the supermarket and use my best Hulk voice when we wrestle.  I tickle him like crazy and he fills this house with so much laughter that you would almost think this was a normal, happy home. He loves to sit at the table with me and do legos but never once have I sat there without glancing over to Ty's empty chair imagining him there.  I imagine the same scene in my head with a healthy Ty laughing along with his brother, building legos with him and then chasing him around the house.  I can hear his voice and imagine how strong and loud his giggle would be if he was here and healthy.   Ty was such a beautiful little soul.  He was so incredibly special, I still can't believe he is gone.  I really can't.  I can look at his pictures for hours and hours and just relish in every curve of his face.  I just miss him so much. 

Thank God for Gavin.  He gives me a reason to get out of bed every day.  He puts a smile on my face during my darkest hours.  Forced or not, a smile is a smile.  He is such a character, and I just know that Ty would have had so much fun with him. 

Meet SuperGavin.  Thank you, Jen!

It makes me so sad that Gavin doesn't have his brother to play with anymore. It makes me sad that he loves superheroes so much, now.  Can you imagine how SuperTy would get a kick out of this?  When I was picking Gavin up from preschool at the regular time every day, we would get home and have nothing to do. Just me and Gavin. There's only so much I can play before I lose my mind, so I ended up extending his hours at school so he can be around other children his age all day long. It also allows me to spend more time working on the foundation, and I finally feel like we are making tons of progress despite the long road ahead of us. 

I have learned so much about the challenges behind funding childhood cancer research and just HOW MUCH money is needed to support the cause.  I do believe we are finally taking some bigger strides toward getting there, and there are some very exciting inroads being made.  I just can't wait until I can update you on all of these big announcements once they go public :)   There will be big things happening to raise awareness for childhood cancer and to fund research, and I couldn't have a better group of supporters to help me honor Ty by spreading the word.  Thank you all so very much. 

Friday, March 15, 2013

We are Cancer Moms

Over the course of the years since my son, Ty, was diagnosed with cancer, I reluctantly became a cancer mom.  AKA: Momcologist.  It is not a group that I wanted anything to do with.  In the beginning, I denied myself from developing a relationship with another cancer mom because I simply couldn’t take on her fears in addition to mine.  And I didn’t want to believe that her child’s potentially poor prognosis might be the same as mine.  I didn’t want to know. 

My first day in clinic on the 9th floor at Memorial Sloan Kettering was spent people watching.  It was October 2010 and I stared at all the babies in strollers with puke buckets underneath.  Kids walking on crutches because they had a limb amputated, dragging with them IV poles that filled their bodies with poison.  And moms, dads and grandparents that wore supportive tee-shirts like “Team Cory,” “Prayers for Ashley” “Warrior Jake” and “Super Nate.”  I will never do that, I thought.  I will never embrace this.  I will fight this kicking and screaming every second of the way.

By December I was wearing a “SuperTy” tee-shirt and have worn them almost daily ever since.  Even after Ty died in October 2012.  I had no choice but to accept the truth.  That I will forever be a cancer mom.  It doesn’t matter that I didn’t want it… none of us did. 

We are all different.  Some of us shout from the rooftops about the unfairness of it all.  Some are angry.  Some are religious.  Others want nothing but privacy.  Regardless, we walk the same dark and painful path and share most of these things in common. 

·         We are smarter than our doctors when it comes to our own child.  Our instincts tell us if it’s neurological nausea or if it’s from the chemo.  If it’s a belly ache or c-diff.  If it’s an infection or a false positive (or a false negative for that matter).  We analyze ever sniffle and consider the nuances of every blink.  “Do his eyes seem shifty to you?  Was that a slight limp?”

·         We look at the daily and weekly bloodwork results and immediately scan down to see the ANC first, then the platelets, the red and white blood cells, then the electrolytes and so on.

·         Lysol and Purell are our best friends.  Our hands are dry and chapped because of it, but we don’t care because we can’t afford to get sick, and more importantly we can’t let our child get sick.   

·         We have all slept on a pull out hospital chair that is as comfortable as a concrete slab. We have all turned our backs to our sleeping child while in this “bed” so we can cry silent tears as we listen to the beep of the monitors telling us that oxygen saturation is low or there is “air in line.”

·         At the hospital we climb into bed with our children only to stay awake all night in fear of pulling on one of the various wires or tubes attached to him or her. 

·         We have donned rubber gloves and flushed a mediport.  We have administered meals through an NG or G-tube.  We have gotten excited to write down “1/2 of a potato chip” or “one bite of cheese” on the growing list of calories for the day. 

·          We have seen our child suffer in a way no parent should ever have to witness.

·         We kiss the scars.  We have an intimate knowledge of each and every one.  The shape, color, size and texture.  The exact location.  I call them my “magic kisses” and sometimes even I believe that they can make the boo-boos go away. 

·         We own bags with several different compartments that are filled with medication of all kinds.  It never leaves our sides.  We carry spare parts to g-tubes and needles for mediports in the same pocket as the baby wipes. 

·         We have buckets and tissues everywhere, and we have mastered the “reach behind” to help our child throw up while driving the car.

·         We have all been given a treatment “roadmap” only to discover that there are countless twists, turns and bumps in this road that they didn’t warn us about.

·         We don’t sleep well.  We are night owls, not because we want to be, but because we are haunted by our helplessness.  We go online and we research for hours on end, which is why…

o   We know the names of children all across the country, what type of cancer they are fighting and how they are doing. 

o   Like a doctor reading a patient file, when we see something posted about a child with cancer, we know how to scan the story to find the age, symptoms, diagnosis, treatment, and we skip to the end to see if the child died.  Not because we are morbid but because we are hopeful.  Because we are looking for another child like ours, and praying that his or her story ends in a happy life without any complications.  When that isn’t the case, we shake it off and remind ourselves that our child will still be the one.  That miracles happen every day. 

·         We suffer from scanxiety.  The weeks and days leading up to an MRI result in more anxiety than the most stressful life moments imaginable(i.e. your wedding day, your biggest final exam, your most exciting job interview – these don’t even hold  a candle to such pressure). 

·         Because of this, we carry a multitude of good luck charms, we become victim to superstition or practice rituals like eating the same thing for breakfast on an MRI day. 

·         We are guilty.  It was our job, as a mother, to prevent this.  To protect our children.  We look at pictures and wonder, “did he or she have cancer yet?”  We recall things that may have been indicative of cancer but we didn’t alert our doctor, like the time we thought the baby was just car sick.  Maybe if we caught it sooner it wouldn’t have gotten this bad.  Maybe we ate some soft cheeses while we were pregnant, or fed the baby non-organic fruit.  We constantly point the finger at ourselves with a wealth of reasons why we are responsible for this. 

·         We have blind, undying hope.  No matter what we read, no matter what our mind knows to be true, our hearts never give up on our children. 

·         We negotiate with God.  We debate when enough is enough.  Before cancer, tubes in the ears or a tonsillectomy would make us gasp.  After the cancer diagnosis, we are forced to consider far, far worse outcomes like the loss of a limb, hearing, eyesight, the ability to speak or eat.  Severe brain damage.  Death. 

·         We are humbled by how good and kind others can be.  We have made friends with complete strangers who fall in love with our children and just want to help. 

·         For those of us who have other children, we dread and avoid the pediatrician like you can’t imagine.  On one hand, they have to break an arm before we reluctantly take them, and on the other hand every time they lose an eyelash we assume they have cancer. 

·      Our other children do not get the attention from us that they so deserve, and that we SO WANT to give them.  It is inevitable that they will spend the rest of their lives, their new lives post-diagnosis, sitting on “the back burner.”  They don’t have cancer.  They are going to live.  Our other child might die.  It becomes that simple.  Homework doesn’t matter anymore, blood counts do.  We want to be there to help you ride a bike, but we might not be. 

·         We have a beautiful perspective on parenting because we have been forced to appreciate every single day with our children – even the worst days.  Banal conversations are insulting when you are scheduling your child’s radiation therapy or waiting for him to recover from surgery in the PICU.  We want to shout at parents with healthy children who complain about the stresses of pee-wee league or laundry, “Just enjoy your children.  There’s no such thing as too many hugs!”


For those, like me, who lost their child:

·         We will never heal.  We will never “get over it”. Even when we are smiling, know that we carry this pain every second of every minute of every day.   You may not see it, but we cry every day. 

·         We are failures.  We didn’t save our child despite all of the prayers, the advocacy and the infinite hope.  Now we will do everything we can to continue fighting childhood cancer to try and make up for our failure by honoring our children. 

·         We have a love/hate relationship with music, poetry, nature and all things beautiful because they remind us so much of what we lost. 

·         We look for signs everywhere.  We worry about our child being alone and we yearn for confirmation from them.  We hope the warm breeze was her hug telling us “I’m here” or that the light flickering was his silly way of saying “I love you.”

·         We beg and plead for them to come to us in our dreams.  Every night as I go to sleep I whisper “Forgive me. Come to me in my dreams because that is where we can still live together.”  I have yet to dream about my Ty. 

Yesterday Gavin saw a ladybug crawling on the floor in his toy room.  Now we were both visited by Ty this week!  I always leave the ladybugs alone and they seem to disappear just as fast as they appeared.  Like magic.  This has been a good week for all of us.  A very busy week, but a good week.  Thank you, everyone, for loving Ty and sharing his story.  So many exciting events planned for the Foundation in upcoming weeks/months.  Please make sure you check his Facebook.  I will be posting a monthly and weekly calendar of activities to keep everyone informed! 

I love you all so much, thank you for your support.  As Ty would say, I love you Big Much!

Sunday, March 10, 2013

I've been waiting!

Look at this BIG BOY!  Three and 10 months.  Looks like he's six!

I haven't seen a real live ladybug for two months.  We had a big snow day on Friday so I had three very long, uneventful days at home with Gavin and of course, I thought of Ty every second.  Yesterday, I finally asked him to send me a ladybug.  I try not to do that because I don't ever want to be disappointed, but I had to.  I was crying.  I told him that I need to know he is okay.  Please.  Send me a ladybug today.  I looked up on all the walls and ceilings wherever I went.  I started to doubt whether or not they ever really meant anything.  I put Gavin to bed and settled down to watch a heartwarming movie.  The movie, "The Intouchables" was in French (subtitles) and since Lou wasn't home I knew it was going to be my only chance to watch it.  I opened a bottle of wine, snuggled up in Ty's spot on the couch, and watched a beautiful movie about a wealthy man who was paralysed from the neck down, and the unlikely friendship that grows between him and a derelict young man that he hires as a caregiver.  I couldn't watch this man without wondering if that would have been Ty if he got to grow up?  And if it was, would Ty still have such love and appreciation for life?  I do imagine he would have.  It was a warm movie with a tinge of sadness for the average viewer, but for me it touched me deeply on so many levels. 

I was tired and drained when it ended.  It was late, I turned off the lights, and headed toward the stairs.  Looking up, there she was.  A huge, golden ladybug just waiting there for me.  Can you believe that?  My Ty is just incredible.  He really is.  He is such a good boy.  I cried out loud when I found her.  I couldn't stop sobbing, so much so that a grumpy Gavin with bed head downstairs to see what all the commotion was about.  He wasn't as interested in the ladybug as he was in going back to bed, so I dried my eyes and had to cut my visit short, but it's okay.  All I needed was to see that ladybug.  Everything is better now.  Ty is okay!!  Thank You, Ty.  Your name isn't "T-Y" for no reason :)  Someday when I get a tattoo, it will be the words Thank You, with the large T and Y coming together to spell your name. 

I have little else to share because this one little ladybug has kept me happy for the entire day.  I think she'll keep me going for a week!   Getting confirmation from Ty like that, it's so much more than coincidence.  It's beyond amazing. 

I am so grateful for all of the positive responses from last week.  I am so excited about how many people are getting behind me and the entire childhood cancer community without being vested in it for any other reason but the fact that they are loving, empathetic and compassionate about our children.  Everyone how has reached out, who wants to help, who shared on FB despite the negative responses, every single one of you has a bigger heart than most.  You all give me strength and encouragement to keep doing what I'm doing for Ty - even when I feel like I'm falling the hardest.  Thank you. 

The Unstoppable Mom contest for Kelly and Mike?  All I can say is that I'm truly disappointed.  I get it.  It was run by a marketing and PR team at Children's Motrin - they had complete control because it's their sponsorship - and I guess there isn't a lot of talking points for children's motrin that can translate well in a story about childhood cancer.  It's all about the advertising, the soundbites, the positioning.  Commercializing serious, heartfelt stories like that is also really, very shitty.  So many of you worked so hard to create a beautiful and powerful nomination and I am just so grateful for all of your kind words.  Thank you.  Some day the media will listen!!  That is my promise to Ty.  His story will be heard in a big way.  I hope at least one of the people reading those countless nominations has checked the blog, fallen in love with Ty, and become one of us :)

The launch of the Muddy Puddles Project is right around the corner!  Please be ready to jump in those puddles during April Showers :)  In addition, we have a date for our annual Muddy Puddles Mess Fest.  It is August 10th so mark your calendars.  If you are out of state, there will also be a lot of ways posted to the website that will enable you to take the concept to your hometown as well, from hosting a muddy puddles birthday party to hosting a muddy puddles event at your child's summer camp.  We will give you the ideas and all you have to do is execute in honor of Ty.  I am very excited to do this for Ty.  I think he will be getting such a kick out of it (as he already has been, I'm sure).  The whole concept is such a pure representation of everything Ty loved. 

That's all for now.  Leaving you with a baby picture of Ty, 14 months old, just because it was accidentally in the folder I opened when I was posting the ladybug picture.  I can never look at him enough anyway. 

Thursday, March 7, 2013

Sorry if my life depresses you for a second

“I don’t read your blog, it’s too sad.”

This is a statement I have heard countless times from friends and acquaintances.  I have also had some people tell me that when they share Ty’s story, they sometimes get a similar response.  Or they are questioned why they would care so much about these kids with cancer, "Isn't it too depressing?"  Yes, kids with cancer is very, very sad and very, very unfair.  But it exists, it is a horrific problem, and nobody wants to talk about it because it's too depressing?  I don't get it.  Every child is at risk.  We can't keep turning a blind eye.

I understand that it is very sad, and I certainly don't expect people to hang on my every word, but it used to bother me if someone proceeded to ask me how Ty was doing following a statement like that.  I began writing about Ty’s life with cancer because it was too painful for me to talk about it.  To explain medical details over and over and over again.  I wanted to say… “if you want to know how he’s doing READ THE BLOG!” I didn’t, that’s not my style, but how I wanted to sometimes.  Instead I would share the latest news and politely update whoever was asking.  In hindsight, it was hurtful to make me answer that question when everyone knows I created this forum to avoid having to do just that.  Sorry my life is too sad for you to read about, fine, but then don’t ask me to talk about it.  (I hope this doesn’t cause anyone to refrain from asking how I’m doing now – that is totally different and I truly appreciate that you care).

I don’t want to be polite anymore.   Instead I want to cram this message down people’s throats.  If they don’t want to read about it, then I want them to hear about it!  I want to get on a soapbox and talk about it all day long.  I don’t know why the media isn’t covering childhood cancer.  I don’t know why no one wants to talk about the sad truth that kids are dying every day and with more research we can give these kids a better chance.  I want to remind parents everywhere that NO CHILD is immune.  Cancer happens to children at random, and there is no known cause.  It is completely different than adult cancer, and it should be treated differently.  That instead, only one new drug specifically developed to treat pediatric cancer has been developed in 20 years, yet the incidence of the deadliest childhood cancers have increased by 29% in those same 20 years.  We need to stop using the same treatments that were designed for adults and start from scratch, break the mold and approach childhood cancer differently.  I want to hold up a photo of Ty, healthy, followed by photos of what cancer did to him – not just the disease, but the horrific treatments.  It was the medication that caused full body muscle myopathy.  It was the side effect of treatment that left him paralyzed from head-to-toe. 

Cancer is typically approached like weeding a garden.  Pull the weed (surgery), put something down the entire area to try and get at all the roots underground (chemo), and then sprinkle weed killer in hopes that no new weeds can grow (radiation). Of course, weeding a garden so aggressively also puts the healthy plants at risk.  This is why we need a new approach if we are going to save our kids. 

I recently shared an interesting article with Ty’s neurosurgeon, Dr. Jeff Greenfield, about a new tumor dye that is being used in the operating room. The dye reacts with cancer cells, causing them to change color.  This allows the surgeon to remove more of the tumor tissue while avoiding damage to the healthy tissue around it.  Obviously a very important factor when dealing with an organ as critical as the brain where only so much healthy tissue can be destroyed before irreversible damage is done.  Our wonderful doctor responded along these lines.. "Yes, we have started to use the dye.   My philosophical issue, however, is that we should instead be striving for a day when getting a 95% vs a 99% resection will be unnecessary. A moot point.  Our research efforts are directed toward targeted therapies instead, meaning we would require only a limited tumor biopsy or blood samples, then we can sequence the tumor, match the target drug, vaccine, molecule, what-have-you and treat the patient that way. It will put me out of the brain tumor operating business but I would be very happy with that."  That response right there is exactly why we need to fund research.  There are children that are suffering with a terminal prognosis, waiting for such a targeted therapy to become available to them. 
I often say that having Ty made me a better person.  When I reflect on our life before his diagnosis, though, I wonder about that.  Instead I think it was his diagnosis that made me a better person and a better mother.  Before he got sick, I was different.  I was more selfish and less empathetic to the problems of the world around me.  I loved my boys so much, never could I have imagined something would happen to them.  Not my Ty!  He was too wonderful, the light of my life.  He was going to be a quarterback, a surfer, a senator.  He was going to grow up to hold the door for girls and stick up for his classmates that get teased.  He was just a cool kid who was impossible not to love.

Oh how I wish I could go back to living that happy life with blinders on.  I wonder if I might have been the person that says, “Why do you read about all of these children with cancer, it’s too depressing.”  Or, “I can’t read that blog because it’s too sad.” I hope not.  But the truth is, I knew nothing about childhood cancer and never even heard of Caring Bridge or read a blog other than Perez Hilton.  I wish Ty never had to get sick in order for my eyes to be opened.  I want my self-absorbed little life back more than you can ever imagine.  But that is impossible.  Now I have a new purpose.  I need to continue sharing Ty’s story until more and more people listen and get behind the cause, regardless of how sad it is.  You know what isn’t sad?  A kid with cancer who gets better and goes on to become a quarterback, or a surfer, or a senator.   Together we can give more kids like Ty that opportunity.  

Monday, March 4, 2013

What a wonderful network of support this blog has blessed me with.  Thank you so much for the wonderful comments, emails, messages and gifts I received over the past few days.  So many people have reached out to offer me comfort and to tell me that what I’m feeling is okay. 

I can’t change what happened, and my regrets will never go away, but I do agree and believe you all that Ty knows how much I love him, that he could hear me when he was asleep right into his final hours. I even believe he was listening as I read him book after book after book throughout the entire night after he passed away and lie cold in my bed.  I felt calm, as if he was still in that room with me, and I couldn’t think of any other way to let him know that it was time for peace so I read to him.  The coroner wasn’t coming until morning, so Lou and I had one last night with him resting between us.  I remember feeling so scared knowing that it was the last time.  I thought I would never be able to sleep again without him there.  Even that night, obviously I couldn’t hold him or curl up with his arms wrapped around me and the finality of it all was and is torture.  I just looked at him, cried to him softly, kissed his cheek, touched his hair and whispered in his ear into the wee hours of morning.  At some point I drifted to sleep for an hour or so.  I will always struggle with those memories because they were obviously the saddest I have ever/will ever experience, but there is also so much beauty and perfection in how Ty left this world.

I am very proud of what we have done to honor him over the past four months.  The TLC Foundation has the most wonderful volunteers and dedicated interns who are helping us to make a difference in this very long, but very frustrating battle.  Frustrating because, for example, the implementation of the government sequester resulted in enormous budget cuts across the board, including healthcare.  Childhood cancer research will take a huge hit, and it was already grossly underfunded.  These are huge steps backward and it is a nightmare.  The effect this will have on pediatric cancer research is nothing short of horrifying.  The unexaggerated truth is that more children are going to die now that research is being cut.  There are kids who are clinging to hope as they pray for new treatment options, just as we were.  Parents who are trying to keep their children alive until new, promising options become available.  Much of the existing research and progress being made will now come to a halt.  Future research will not be funded.  

As a last minute resort, I pulled together a press release to express how incredibly serious this is when it comes to childhood cancer and shared it across a wealth of national broadcast media outlets.  No surprise that they steered clear of this, but how I wish someone of influence in the media would embrace this cause and speak out on behalf of our children.  We need so much more people to get behind our children and fight for them.  The good news is that the people whose eyes are already open, like each and every person who reads this blog, are powerful and passionate and determined to make a difference.  Thank you.

Over the weekend, our friends at DV Depot and Big Hungry Bear Productions donated their equipment, time and talent to tape footage for our upcoming launch of The Muddy Puddles Project.  We wanted to create a video that we could leverage to share Ty’s story, raise awareness and announce the project.   We are working so hard on the foundation and everything involved.  We can’t wait to share updates with you all on the partnerships we have been exploring, the research investments we are looking to fund, upcoming fundraisers and the increased media coverage we have secured in support of the general awareness initiative.  In just four short months, we have accomplished so much thanks to all of you. 
Gavin helping

Friday was a crazy day for me so Lou picked up Gavin from preschool and spent the entire evening with him. That night he shared with me a conversation they had, and it made me cry a couple of those big tears that are simultaneously happy and sad.   

“Do you remember when Ty could walk?” Lou asked Gavin.
“Yeah,” Gavin answered, looking around at his toys and seeming very distracted.
“Do you?  Really, Gavin?  Do you remember when Ty could walk?”
After a few seconds of looking disinterested, Gavin said softly “Come here, I want to show you something , Daddy.”  He took Lou’s hand and pulled him into the den.  He sat on the floor and started scooting like his brother used to do. 
I hope he never forgets those days with his big brother. 

Friday, March 1, 2013

Reflecting on Hospice

Tonight I am lost.  I feel foolish.  I am sad for a baby boy that is on hospice care after fighting AT/RT for almost a year.  Sad isn't the right word.  It is so much deeper than that.  It brings back a flood of memories from when Ty was in the same situation.  His inability to sit up.  His inability to swallow.  How he eventually stopped tolerating food or water.  His "smile of the day" despite it all. 

I saw a post on a private facebook page that I am a member of.  It is a site for parents of children with AT/RT (the same tumor type that Ty suffered with).  I remain active there because I feel that I have a lot of knowledge that some of the other parents going through this might benefit.  That being said, it is very hard to watch the posts and listen to the conversations among all of these families struggling with treatment.  I recently saw a post from a mom that described symptoms I was all too familiar with.  They were trying to figure out what was wrong, what kind of virus the baby was fighting, but I knew in my gut that it was radiation necrosis and after days of discussions with doctors, radiation necrosis was indeed the outcome.  So unfair. 

A post came up today that inquired about signs when death is near.  It was a simple post asking parents who lost their child to share the signs because this father was worried.  I recognized the name of the dad who wrote the inquiry and didn't recall seeing any bad news about his child regressing on FB recently, so I sent a private message.  I skirted around the issue, asking if I missed anything about his son's condition.  I shared a very basic overview about Ty's last days (how he slept all day, how he was running a very high temperature, how he developed bed sores) but also insisted that I hoped his son was nowhere near that. 

(paraphrasing here)
"He is getting over being sick, so maybe that's all it is." said his Dad.
"Oh, I'm sure that's all it is.  Ty had so many severe ups and downs, I will pray your baby boy starts to improve soon."
But then I thought, "I should mention how Ty stopped eating."  So I did.  I told the dad that it was a huge sign when Ty couldn't tolerate food anymore.  That he threw up more and had no tolerance, even for water.  I realized that this family and their experience sounded familiar to ours.  They don't know what to expect, and neither did we.  Finally, I asked, "what kind of medical help do you have?"

"We have had hospice for a few weeks now. They come by once a week until we need them more." 

Oh no, how did I not realize this!!!  I don't know what he said after that because my head started to spin with devastation.  Why was I surprised???  The man was asking about how he can tell if his baby is dying, and here I was telling him he was probably just getting over a virus.  And I still hope he is!  But how did I not realize that his poor baby is probably on hospice care?  That he's vomiting more often because he can't tolerate his feeds anymore, just like Ty.  I haven't changed.  I maintain hope even when a good outcome, the right outcome, is impossible.  I don't regret that, but I do regret not being more straightforward with this family.  What is happening to their child most likely is the beginning of the end.  I want to call them and cry to them and tell them that everything will be okay and everything will never ever be okay at the same time. 

I'm sorry to reflect on these sad events in such detail that may be difficult to read, but tonight I have to.  Sometimes I need to write about all of the memories and pain that is swirling in my head in order to help me find peace. 

When we were sent home on hospice care the first time, in December 2010, we didn't expect Ty to survive more than six weeks.  Lou and I talked privately about our wishes, and we decided that we never ever wanted to leave Ty's side.  That we wanted to be alone with him when he died, and that we would simply drive to a crematorium (what an awful word) with Ty in my lap, wrapped in nana blankie, because no one else should touch him.  He was just a little tiny baby.  We couldn't imagine anything else.  Well, as you know he didn't die at that time.  Instead, SuperTy defied all odds.  He broke all the rules.  He got better without any real explanation.  He gave us almost two more years of joy and laughter through tears and I wouldn't trade that time for anything. 

Say what you will... this kid wasn't going anywhere :)
When Ty was sent home on hospice care in September 2012, it was different.  Lou and I watched Ty suffer way too much for way too long.  We knew that he was going to die, but never stopped praying for a miracle.  Lou, my amazing husband and the best Daddy in the entire world, had the strength to make arrangements weeks in advance.  He was the one who asked all of the impossibly difficult questions.  He had the conversation with me about buying a casket.  Do you know why we did that?  Because the only other option was a pine or cardboard box for cremation, or, if I wanted to hold him in my lap I would have to do so while he was in a body bag.  That is the law.  There is no peaceful way to do it, where I could hold him in my arms until the very end.  You can't just drive your dead child to a crematorium and see him through to the other side like we imagined.  So, we bought a casket because we wanted him to travel to the crematorium in something comfortable.  We filled it with so many beautiful tributes from all of the people he loved the most.  Lou and I traveled with him in a Hertz, Lou helped with transporting Ty in and out of wherever we were going, and we were there to press the button that lit up the incinerator.  It was the most horrific and painful goodbye imaginable, but I am at peace with it.  I still can't believe it even happened.  It's like it wasn't real.  We stood there, we watched his casket roll into the incinerator, and somehow in our semi-state of consciousness we managed to push the button together.  Not because we wanted to, God no, but because we didn't want anyone else to.  Can you imagine?  Making the decision to do that to your child? 

I do live with one awful, disgusting regret that haunts me every day.  I haven't shared this with anyone other than Lou.  I guess tonight's post is sort-of a cleansing for me. 

My last interaction with Ty when he was conscious was terrible.  I will never ever have the chance to change that and it breaks my already broken, bleeding heart.  He was whining for me very early in the morning and I told him he needed to sleep another hour because it was too early to get up.  I was grumpy and I wasn't nice to him about it. I had only fallen asleep probably an hour or two before he was waking up and I was losing my mind.  Obviously, I never imagined that would be my last interaction with him before he slipped into unconsciousness.  Remembering that, I can hardly even keep writing through my tears.  I asked Lou to please get up with him instead, and he brought Ty downstairs.  When I came down an hour later, Ty had just fallen asleep.  He didn't wake up again and I will never ever forgive myself for that.  I yearn to talk with Ty one last time more than you can imagine.  I need to tell him how much I love him, how sorry I am, and I need him to tell me that it is okay.  That he is happy.  I don't want to talk to the empty air anymore.