Sunday, September 30, 2012

Boobies

Today is the last day of September, marking the close to Childhood Cancer Awareness month.  I think it's great that there is more attention for the kids during September, but it's also disheartening that we haven't made more of an impact so that people are aware every day of the year. Since Ty was diagnosed in 2010, however, I have seen improvements.  I have seen social media leveraged to a much higher degree, and I have seen more and more attention in mainstream media. I feel like we are on the verge of making a difference, and I am excited about that. 

Then my excitement turns to pure disgust when I can't escape the fact that my almost five-year old boy is lying on the couch dying a little bit more with each passing day.  I'm kicked in the stomach by a steel tipped boot with the horrifying thought of "too little, too late."  It may be too late to save Ty, but I will never stop trying to spread awareness by sharing his story. His long, painful story where a frightened two-year old boy spends the rest of his life trying to escape the pain, to get home from the hospital, to get out of bed and back on his feet, only for cancer to creep it's way back into his life over and over again... stealing a little bit more from him each and every time until he is left disabled from head to toe, unable to eat and barely able to talk.  He can still smile, though, and that is a testament to the perserverance of our little fighter.  This, right here, is why we call him SuperTy.

Big smiles from Ty this morning

With the end of Childhood Cancer Awareness month, we are also kicking off the month of October... which pretty much everyone knows is Breast Cancer Awareness month.  I am always so proud to be a woman when I see all that has been accomplished on behalf of spreading awareness.  The pink ribbon is no longer limited to October, either.  It is recognized year-round with countless "pink" products for sale everywhere you look, at any given time.  The average long-term survival rate for women diagnosed with breast cancer is 81-86% depending on the woman's age at diagnosis.  But with early detection - which is driven by awareness - that survival rate increases to 96%.  I imagine that with increased awareness for our children afflicted with this disgusting disease, the odds for our babies can improve with similar leaps and bounds.

Tomorrow is my birthday.  Instead of offering me a "happy birthday" (because we all know I am far from happy) I ask of you to share his story with anyone and everyone who will listen.  That is the greatest birthday gift you can give to me. 

One of you posted a comment that said how you want to see "I love kids" bracelets everywhere in addition to "I love boobies."  As a mom with two perfectly healthy boobies, you said that you would be more than happy to sacrifice those boobies to save a child with cancer.  That was one of the most beautiful, selfless statements I've read over the past few days, and I couldn't agree more.  Take my boobies.  My arms.  My legs.  My anything.  Save the innocent children from the horrors of cancer.  I look at Ty's baby pictures and I still can't believe that something so pure and so perfect could be afflicted with such pure evil.  Something has to be done. 



Ty had a good day today, but it seems his head pain is increasing.  We have it under control so he isn't suffering too much, but we need to medicate more often and that frightens me because I don't want his pain to get worse.  I sit and debate with myself all day long.  I guess this is really happening?  Wait, no, if this was real he wouldn't be so wide awake.  He wouldn't be so strong!  His breathing sounds better today?  Maybe tomorrow he will be well enough to sit up again, like he did last week.  I think he is getting better and better.  He's sweating profusely and he's had morphine every three hours, I guess this is really happening? 

My mind is all over the place.  I get up from the couch to get something for Ty and I keep finding myself in the closet, staring at his shelves of supplies, with no idea how I even got there or what I'm looking for.  Anyone who knows me well would laugh and think "what else is new?" but this is different.  I'm not so much my usual preoccupied self... I am walking through these days in a foggy cloud of sorrow that is suffocating my mind and I am so afraid of how I will possibly survive if Ty leaves me. 

Thank you for all of your kind words and constant encouragement.  I know you are right.  I appreciate your positivity.  I find comfort when you share your personal experiences, as well.  Thank you for being so open, honest and understanding.  Remember to please talk about Ty today, for me on my birthday.  Hug your children.  Let them act crazy and get messy.  Make sure they have fun and that they know how much you love them.  I know you will.  Thank you.

Saturday, September 29, 2012

The girl with the broken smile


I used to be the girl with the big, ever-present smile. All my life, I have been complimented for that.  Whenever I meet new friends, business colleagues, teachers or sales associates, they would often tell me that I have a great smile.  I believe that's because I was always so easily humored in every day things, and I lived a genuinely happy life.  I love to laugh.  I think I used to smile so much because it is contagious and it feels good when people smile back.
Ty gets his smile from me.  He is exactly the same.  He laughs so easily and I have no doubt that he would live his life with a huge, sh*t-eating grin on his face all the time.  He always has.  Goofballs.
A few people have asked.  Ty's eyes are green (it's always hard to tell in pictures)
 
I don't think I'll be that person again because I'm so broken now. I'm a better person because of Ty, but if he leaves me behind he will be taking my smile with him.  I know I will find so much happiness in Gavin, but it's just not enough to fill the gaping hole in my heart, the open wound that will bleed forever. 

Ty is still sleeping more during the day, but we have had some great interaction with him over the past two days, too.  His voice is very, very low, but he tries so hard to communicate and we are managing well.  Through all of his ups and downs in these two years, speech has always been difficult when he was at his worst, so this is not a new routine for us.  Lou, Mely and I are pretty good and figuring out what he wants and keeping him happy. 

Ty has always been magnetic.  His long, curled eyelashes and his ridiculously cool hair are just so unforgettable.  I mean, his hair looks like this every day, and we don't do a single thing to it to make it stick up like that.  It's awesome.  He's just a little sleepy here, but feeling good, don't worry.  He is the most beautiful boy in the world. 


I received this message recently that is a true testament to my Ty's magnetism. 
My daughter (who is Ty's age) was going through pictures from three years ago and we came across some from a mutual friend's birthday party and there was Ty. I remember him in the white t-shirt with the black skull and those kick ass boots like it was yesterday. I didn't know you at all then, but he stood out. A kid you meet for 2 hrs and fall in love with.

Because of his weak voice and his general sleepiness, we haven't heard Ty actually laugh in weeks.  He smiles, but the laugh just isn't there and I wasn't sure if I would ever hear that most breathtaking sound again.  Then today it happened!!  I brought in the mail and we had an awesome package for Ty and a very fun package for Gavin.  Mely said, "where's my package?" as a joke.  Naturally, as a mother of two small boys I answered "in my butt."  Oh man did that make Ty laugh!!  He was congested so it didn't sound the same, but that doesn't matter.  He laughed out loud several times over the same silly joke.  See?  Ty loves life and finds humor in the simplest, silliest things.  Why can't God take more crotchety old men and leave the little boys here to make this world a better, happier place.   


I was looking in the mirror today and I am just so sad.  I look like a completely different person.  The smile is gone.  My skin is so worn and dry.  I look into my eyes and there is nothing there.  Like I've completely checked out.  Cancer is sucking the life out of me just as much as it is for Ty.  Probably because we are 100% connected and I feel all he feels.  It's pure evil and it has changed me forever.  If we lose Ty, all of our future happiness will only make the void in our lives more obvious at the same time.  I will never smile as easily or live a life filled with happiness, but I will not let my sadness ruin the fun I have planned for Gavin, either.   

Lou and I went online and bought Ty a suit today.  All white.  You know why.  I still hold onto the hope that we won't need it, as I know you all do.  I believe your prayers and your love for Ty is so strong that anything is possible.  But, still... did we really do that today?  Is that even possible?  I hope you never have to experience such pain, and for the countless people who have reached out because they have walked in these same shoes - thank you for helping me with your kind words.  It takes so much strength just to allow my pain to be yours all over again.  Thank you.

A great friend and huge supporter of childhood cancer awareness arranged a beautiful prayer chain for Ty this afternoon.  I think hundreds of people participated and I know that God was listening.  I went into town for the first time in over a week and was joined by a wonderful friend for a late breakfast.  When 12 noon rolled around, we crossed the street, stepped into the church, and prayed together.  It was comforting.  It was also hard to hold back the tears.  Ty has been through hell over the past two years.  He has endured so much.  It sounds selfish to write this, but my prayers for a miracle have stipulations attached - and I struggle with that.  Unless Ty is going to jump off that couch, returned to his full physical potential, then I don't want this anymore.  He has fought too long, and been knocked down harder and harder with every battle.  He always gets up again, but I am ready to tell him "not this time."  His stitches from his 27th surgery are still visible. How many does it take?  I look at him on the couch, how confused and uncomfortable he is, and I just don't want this for him anymore.   

 
Please, please, please, holy, gracious God, help him to jump off the couch and onto his freckled feet. I promise you, he will be the greatest man someday. Ty Louis Campbell will spread so much good and bring so much laughter to this world. He's already doing it and he's not even five years old. I promise to have a permanent smile on my face and it will be contagious!!

Thursday, September 27, 2012

Sweet dreams for the best good boy in the whole wide world

"The best good boy in the whole wide world" is a silly nickname that Lou and I have been calling Ty forever.  We actually have a totally goofball song that we sing where we ask Ty "who's the best good boy in the whole wide world?" and he answers "me!"  We get louder and louder and it can always make him smile when he ends it with a scream... "MEEE!"  He has been sleeping most of today, and I like to imagine he is having sweet dreams, literally, since we all know how excited he gets over candy. 

Waiting and watching our beautiful boy sleep is so painfully beautiful.  While he sleeps we sit and run our hands over his soft, delicious hair, our finger slides down his warm, pink cheek, and we kiss him on those billowy, heart-shaped lips of his over and over like we've been doing since the day he born.  I am constantly checking the temperature of his hands and feet to make sure they aren't getting cold.  Several people have told me that is a sign that he will leave us soon and now I am riddled with stress over his temperature.  "Warm.  Thank God.  What?  Ty's sweating?  No, don't take his Nana blankie off, we have to keep him warm."  I am literally in physical pain caused by sheer anxiety.  Couple that with the emotional pain that is beyond any physical pain imaginable... I am a train wreck (you can cut off my arms and legs and leave me in the middle of the woods to be slowly eaten alive and it wouldn't come close to how I'm feeling). 
 
 
When cancer took away his ability to run, Ty enjoyed walking while holding our hands for balance. When he could no longer walk, he scooted around the house on his butt and he loved building towers of blocks or legos with his brother. When he was disabled and limited to the couch (which was 80% of the time these past 2+ years) he found so much joy in his toys and looking through toy catalogs. When cancer took away his ability to even move his arms and play with his toys, his love affair with candy emerged.
 
Now he can't even eat, but we present him with a cool new piece of candy every single day and he still smiles every time. In fact, he received a beautiful gingerbread house the other day and he likes to show it to everyone who enters our home. Today, an adorable candy "jeep" was given to him by a boy in our neighborhood. So sweet! 
 
Some of Ty's loot from the past few days.  Lego guys, mini pumpkins, a blue sparkle jar and yes, the candy jeep
 
I promise you, the Campbell's will be famous among the neighborhood kids for always having totally amazing Halloween candy in honor of Ty.  Yesterday Ty and I looked through a candy catalog and picked out gummy fingers and insects, glow in the dark gumballs, lollipops that ooze blood.  We're getting it ALL!  Today he was tired so when he asked for arts and crafts, I entertained him by drawing candy for every day of the week.  Toward the end, I asked him what kind of candy we were missing (we had red candy, peppermints, swirly candy, candy buttons, gumdrops and blue striped candy).  Ty answered quietly, but just enough so I could understand him.... "hearts."  UGH!  Can he be any sweeter?  How much do you love him?  Here is a picture of our craft for the day. 
 
 
 My house if completely taken over by cancer and all the things that revolve around this disgusting disease.  Here is a picture of the dishes I did after we put the boys to bed tonight.  These are the medicine syringes from the past couple of days.  That's HOW MUCH medicine Ty gets every day, and he isn't even on chemo anymore!! 
 
 
Ty has been throwing up in the middle of the night lately, so I've had a lot of laundry, too.  Lou and I live a life that revolves 100% around Ty and cancer.  We have been fighting so hard for so long, and we watched our angel baby go from the picture of perfect health to hospice.  This is pure hell, but we are still so busy and preoccupied with caring for him that we are totally holding it together (my worst time is always night when I'm alone with my brain that won't stop thinking).  We are trying to love every minute with him without letting our pain take over.  This house needs to be happy and fun always, and we are doing our best to keep it that way.  I can only imagine how much of a void we will suffer from when he is gone.  I am so scared for us and what is ahead. 
 
Two shelves for medicine alone
 
These four drawers are filled with medical supplies and this isn't even the half of it
 

You all know how passionate I am about spreading the word about pediatric cancer.  There is an interesting article in this week's Newsweek that focuses on the need for an increase in funding for all cancer research.  The statistics are so outrageous.  How is it possible that we don't have enough funding for researching this epidemic?  Then consider all of the innocent children who are attacked by this demon.  It's disgusting.  The budget for the National Cancer Institute (responsible for developing ways to prevent, treat and cure cancer) was $5Billion, compared to $144Billion spent on conflict in the Middle East over one year.  Whoa!!  One in two men will develop cancer.  One in three women.  One in four people will die from cancer.  That's 25% of the population.  We need to do better than this, and of course, I think we need to start by saving the children. 
 
Before signing off, I want to apologize if you have reached out to me and found me unresponsive.  If you have left a gift at the doorstep or prepared a meal and didn't receive a proper "thank you" yet.  Please know that the love and support we have been showered with is amazing, and we are grateful beyond words.  Anyone who knows me well, knows that I am almost incapable of returning a phone call, text or email in a timely manner. I don't know why! I think because I always feel so rushed, and I want to take my time in responding or have the time for a good conversation, and then I don't always find that time. Even though Ty isn't an infant anymore, he demands just as much of my time, even more.
 
That's all I have to share for tonight.  Sorry I was all over the place, but that's how scrambled my brains are right now.  Lou and I aren't sleeping well, obviously, and it's catching up I guess.  Thank you so much for all of your love and support.  Always praying for a miracle. 
 
 
 

Wednesday, September 26, 2012

All little boys go to heaven


Ty has been sleeping so much over the past two days.  I was starting to get very worried until he snapped out of it around 2PM and we ended up having a wonderful afternoon/evening together.  I was so relieved because I am not prepared for him to withdraw from us like that.  I need to interact with him.  To see his smile!  I don't know if I'll ever hear his laugh again (other than the fact that I carry that most beautiful sound in my heart everywhere I go), but if I can still make him smile then I can get through the day and cherish the memories made. 

 
Today's smile of the day is brought to you by our friends Stan and Beth.  I have mentioned them before because they always seem to be with us during some of Ty's greatest moments (i.e. when he first stood on his feet again after a month long bout with meningitis, or when he started eating by mouth after his second craniotomy).  Even on their most holy day of the year, they took time out of their holiday to drive all the way up from Long Island and bring groceries and gifts.  Ty loves balloons, and this Spiderman balloon is probably the coolest we've ever seen. 
 
The only thing cuter than this picture is the picture I have in my head of Gavin's reaction to the balloon.  He slept over his Nana's house last night and didn't get home until late today.  He completely freaked out over the Spiderman balloon.  He even tried to bring it to bed with him tonight :)   I wish I took a video of him attacking spiderman with Ty's captain america shield.  


Speaking of Captain America, today Ty told me that he wants ME to wear his Captain America hat (Ty and Gavin got matching ones).  I don't care how ridiculous I look, I promise you I will be wearing this hat all over town.  This winter and every winter.  Ty will be laughing at me from wherever he is, and I pray I will be able to feel those giggles whenever I put this magic hat on my head.  Oh Ty.  You have always been so funny. 


I talked to Ty about heaven today.  It wasn't planned in any way, it just sort of happened when we were alone this afternoon and we were just staring at each other for what seemed like an eternity.  I've tried to talk to him before, but I always get so weepy and he never, ever likes to talk about how he's feeling or what is happening.  Today was different.  Of course I said all of this through tears, but I also maintained a huge smile the entire time and as I spoke I saw real excitement in his eyes.  I can't even begin to tell you how comforting that is. 

"I know that Daddy has told you that you are getting better now.  That you are going to walk, and run, and jump in muddy puddles.  Do you know what else you're gonna be able to do?  Fly.  Do you know what heaven is, Ty?  Heaven is where God lives, and you know how much he loves you.  In fact, heaven is filled with people who love you more than you can imagine because heaven is made of love.  There are so many children just like you there.  And they want to play with you.   A lot of them even had cancer like you, and they just want to hold your hand and have fun all day long!  Heaven is filled with rainbows, and at the end of every rainbow is a giant pot filled with candy and chocolate coins.  And you know what else?  There are muddy puddles everywhere.  You can take the hand of your new friends, run super duper fast, jump as high as the sky and then SPLASH!!"

I was totally winging it, and it sounded so silly when I was saying it, but I think Ty was eating it up.  I had never, ever planned on having a conversation like this with Ty.  Because I refused to believe that he is ever going to leave us.  I still pray with all of my heart and soul that he will be healed, but I also want to be open about the strong possibility that he is going to die.  It sounds so gross to put those words in writing.  I want to throw up. 

Anyway, my mind has been consumed thinking about some of the other beautiful children and their families that I've encountered over these two years.  About Tanner and Ronan especially.  I found a lot of comfort imagining them playing with Ty and I wanted to share that with him.  I even told Ty the names of his friends in heaven, and how much they are just like him.  The hardest part was trying to express the fact that he is going there without his mommy and daddy or brother for now.  I don't know if I did a very good job with that, because I didn't want to scare him by telling him that he is going there without me. 

"Do you remember how I always told you that God is everywhere?  Well, when you go to be with God, you will be everywhere, too.  So you won't really be leaving home, you can be at home with us and in heaven at the same time."  This was about the point where I had to stop before I dropped onto my knees in hysterics.  How is it possible that I am having this conversation with my baby boy who isn't even five years old yet? Is this really happening? 

In my prayers I thank God for every single day with Ty and I talk about how I know Ty is an instrument of God because he's had a positive impact on so many people all over the world.  Then, I can't help but begin the sales pitch.  I tell God... "imagine what an impact he would have if you HEALED him now, with so many people praying for him?  It would be an unquestionable miracle that is talked about around the world!  Ty would grow up to be such an incredible adult, and he would dedicate his life to spreading the glory of your Word, I promise you that as his mother."  As if I have to tell God what His will should be.  I'm only human and I'm desperate.  Lord, hear my prayer.

At bed time, Gavin gave Ty a big kiss and hug and said "I wuv you, Ty, so much."  Then he did something silly that made Ty smile and I whispered "you are his big brother and you have to always look out for that lunatic, okay?  I know that you will take good care of your little brother, always."

Today's biggest smiles of all were at bedtime when Lou made pretend Ty was an airplane and gently flew him around the house and up to bed.  Bedtime is a beautiful ritual between Lou and Ty.  He has always put Ty to bed since the day he was born because Lou used to work later than me and that was his chance for quality daddy time.  Thankfully, Lou has also been able to work from home lately and take a short leave from his business thanks to the incredible support from his best friend and business partner, Charlie, and thanks to his kind staff.  Lou is so afraid that he will miss out on these days with Ty, so he is with us every day and I am just so grateful.  I couldn't do this without him. 

Can I keep him? Please?

I recently began spending my sleepless nights in Ty's room, which is where I am right now.  The totally cute room that he never used.  It has a Captain America theme with an adjustable bed (a hospital bed, but you would never know) and an adorable piece of red furniture that is basically a set of shelves to display all of his cool stuff.  The walls, of course, are blue.  So is his comforter.  When we moved his room back upstairs a few months ago, Lou and I truly believed he would soon be strong enough to turn over in bed and we planned to begin making his transition from our bed into his own room after two long years. 

There are a number of Captain America posters sitting on top of his shelves.  We never did get them framed since we bought them on Ebay.  I am so torn over what we should do because Ty's room is incomplete without framing and hanging the posters.  Should we finish it up the way we planned?  It's all so surreal just thinking about it.  I swear, sometimes I don't believe that this is really happening.  That any of this really happened to me... to us...

I'm so happy now that Ty is in my bed instead of sleeping in his own room.  I'm happy that we will snuggle tonight and all morning.  He is the greatest little boy to sleep next to depsite his garbled breathing as of late.  Unlike Gavin (who moves around like crazy) Ty just wants to wrap his arms tight around my neck and fall asleep.  He stays in that hugging position all night long.  It's the best feeling in the world.

Last night, as I sat in this same "captain america" bed, I cried to God for what might have been hours.  It was more of a stream of consciousness one-way conversation that involved all of my jumbled thoughts being spilled out onto the floor.   I debated a lot over the philosophy of, "it is better than to have loved and lost, then to never have loved before."  While I agree with that, I also struggle with how painful the "lost" part of it is.  My life would be incomplete without ever knowing how much love I was capable of had I never become a mother.  My heart was opened to a world of unknown depths and untouchable beauty at the very moment I first saw my Ty.  But to know that he will soon be ripped from my clenched arms, I will be left with a sea of darkness that has even greater depths into the unknown - it's horrifying.  Unimaginable pain and loss awaits me.  And you would think watching him suffer was the most cruel and unusual punishment imaginable... wait until I am looking for him in the bed next to me and realize he is gone.  How am I ever going to be normal again?  How am I going to survive losing the love of my life. 

So many of you have shared your own heartache and words of wisdom over the past few weeks.  I know you are right and I find so much comfort in your advice and encouragement.  Thank you.  I know I will get through this, I am just so scared of how incredibly lost and sad I am going to be. 

I thanked God over and over again for my gift, my Ty, my miracle.  For the best five years of my life.  Never in the life that awaits me will I experience more love than I have been blessed with in the years I have been Ty's mommy.  I try to be strong in prayer.  To limit my thoughts to being gracious and thankful.  Still, in the end I just found myself weeping and begging over and over again, "can I keep him?  Please?"  Like a child begging to keep the puppy that followed him home from school. 

Ty had a terrible day today.  We are worried about him because he is sleeping a tremendous amount which is very out of the ordinary.  Over the past two years, even during his toughest treatments, Ty rarely falls asleep during the day.  Today he fell asleep about an hour before his nurse came at 1PM.  We agreed it was a much needed nap and when she checked his vitals they were perfectly normal.  However, Ty proceeded to sleep for another six hours!  Then he was up for about 3 hours and now he is back in bed for the night.  This is very scary because it is so unlike him.  As much as I appreciate how good it must feel for him to finally rest, and how much quiet time we had around the house, I am worried that he will remain like this when I so desperately want to interact with him.  In fact, I think this is the first 24 hours that we couldn't even get a smile out of him in months. 

So, instead of sharing Ty's smile, I will share a photo of Gavin that will hopefully make you smile.  Always completely oblivious to what's going on with Ty... here is Gavin dressed like Wolverine and insisting he can wear his costume to school.  He is such a fun little boy.   God bless him.



I don't have the energy to write much more tonight.  A warm pair of arms await me next door.  But I just want to say "thank you" before signing off.  For all of the comments and messages I've received.  And, for the amazing gifts that have been delivered to our doorstep.  And, finally, for the delicious food that we have been enjoying from our friends and neighbors.  We are forever grateful. Much love to all of you from Ty and the rest of the Campbell family. 

Monday, September 24, 2012

Please don't die

Tonight I did something I've been trying so hard not to do.  Ty had fallen asleep for the night and I noticed that his eyes were still partially open.  My heart sank.  I immediately recalled some of the information I read in the hospice handbook under the category "weeks to days" (signs when an individual has weeks to days left on this earth).  During my morning coffee I read the following and thought about how Ty looks when he is under deep anesthesia:
  • the individual may lose the ability to shut his or her eyes completely. 
In a panic of emotion I leaned in and whispered to Ty, "Don't die. Please."  I know he isn't going to die tonight, we will have tomorrow, but I feel weak for doing that.  Like I was trying to take back all of this tough talk about letting go.  Like a little kid crying, "I changed my mind!"  I didn't want to do that.  I wanted to be strong and to tell Ty how it's okay.  But you all know that the truth is it's not okay, what happened to him.  It will never be okay.  How can children like Ty be tortured with the horrors of cancer.  Look at my angel after his bath today, all wrapped up in his towels.  He deserves nothing but beauty and happiness.  Again, maybe he is just too good for this world. 


We had a beautiful treat today.  A very kind and generous friend treated Ty to his own, personal visit from a traveling petting zoo.  This was the highlight of our day.  Ty has been very emotional and generally sad over the past two days, but when the animals were here he perked up and he was very happy to pet them.  He even asked me to show the animals some of his toys (you can see I am showing the tortoise the new Lego Pirate we found in our mailbox today). 


All of the animals are rescue animals and they were very gentle with Ty and Gavin.  Nicole, the owner who came to our home, was nothing but gentle and kind with Ty.  She had a wonderful way with him and we are so grateful for that because we had our doubts about how Ty was going to react.  She was terrific.  For more information about the cause, visit www.animalexperiences.com.   And, check out the size of that bunny next to Gavin!





For her privacy, I don't talk about our Mely very often on this blog.  She has been with us since we moved to Pawling almost two years ago and she is the greatest nanny you could ever ask for us.  I believe she was sent to us on purpose.  She loves Gavin and Ty more than you can imagine.  Her visa expires tomorrow, and as of two weeks ago I would have been driving her to the airport tomorrow morning.  Thanks to Lou, our local congresswoman, and our team at MSKCC for doing whatever possible to extend her stay.  I am SO thankful to say that she will be able to stay in the US for at least another month.  She is part of our family and couldn't imagine if she wasn't with us, with Ty, during this time.  In fact, I can't imagine our family without her ever!


Batman Mely spoon-feeding the spoiled Captain America his soup
Sometimes I look at how big Gavin has grown and I get so upset about how much time I missed out on with him.  Thank God he has had Mely and our loving family to help out during our long hospital stays and emergencies, but it doesn't make it any less unfair for me and Lou.  As we were climbing the stairs to go to bed tonight, he said to me, "Mommy.  Mely is my best friend, and you are Ty's best friend."  I am grateful that he has such love for her.  I am also sad that he notices the difference between how much attention I give Ty.  I hope he will always know that I don't love him any less whatsoever. I hope he feels my love for him just as much as the love that oozes out of me for Ty.  I hope I don't smother him in an unhealthy way when Ty is gone - or, abandon him in a lonely world of depression.  Argh!  How am I going to do this?? 

I have mentioned Ty's bag of "stuff" before.  Since we started going to hyperbaric oxygen therapy and rehab in April I have been carrying around a backpack filled with all of his favorite things.  His Max and Ruby dolls, his robot, his little pooping cow, his batmobile, his seashells, his carnival tickets and so much more.  We were always adding things to his bag of stuff so I was always prepared to help him smile during the long, tough days in treatment.  I think I should carry it around with me forever.  Is that silly?  Maybe whenever I am feeling especially sad I can pull out the poop cow for a giggle.  Or his seashells and remember the day we collected them.  God, this is so hard. 

Your thoughtful words help so much.  They help me cope because I know that Ty is touching the lives of so many.  He has done more good in his almost five years that others will do in 100. 




Sunday, September 23, 2012

A breath of fresh air for Ty


Today was a rough day for Lou and I.  Ty is having more and more trouble getting his words out, and we are having more and more trouble understanding him.  We weren't able to capture any big, genuine smiles today - probably because they were few and far between - but we still made sure to take some pictures of our most beautiful boy.  At one point, Lou was just staring at Ty and started to talking to me about just how perfect he is.  Everything about him.  His lips, his smile, his eyes, his totally awesome hair.  Thank you for all of your reassuring notes and comments.  You're right, we will never forget the perfect curve of his shoulders, the cute little chip in his tooth or the freckle on his foot.  We will remember the sound of his laugh and the feeling of his arms wrapped around our necks at night. But, my God, how we are going to miss all of those things. 

I will never in my life stop longing for his physical presence.  Not for a single minute and this I know for certain. I am not even sure Lou and I will ever be able to sleep without his warm body accompanying us.  I can't imagine it without succumbing to a mountain of tears, so I try not to think about it too much (which is pretty much an impossible feat).  I will be forced to experience it soon enough, so I am trying to keep myself busy with my "cleaning house" and doting on Ty's every need. 


 
My favorite part of today was when I found him in my arms, and he wanted to stay there for a while.  I just walked around the house with him, my hand gently caressing his back, his hair, his face, and after such a long time being unable to hold him it felt almost as good as the day he was thrown into my arms for the very first time.  Then, it got even better.  He allowed me to take him outside.  We walked all over the yard and I pointed out to him how some of the leaves are turning red already.  I didn't even think he was listening because he seemed a little out of it, but when we got to the other side of the yard and I was showing him his swingset, he asked me "how come there isn't any red over here?"  It took me a long time to figure out what he was saying, and he was getting so frustrated, but when I finally realized the word he repeated over and over again was "red" then it all made sense.  I told him that we will have to plant him a beautiful tree with red leaves in that very spot and he thought that was a good idea.
 
After that, I walked him over to a bench and I told him we should sit there and have a date.  He knows this already, but I explained to him that a date is when a boy and girl really like each other and they want to spend some private time together.  He was the best date ever.  We sat there and enjoyed the fresh air for several minutes.  I smothered him with hugs and kisses, relishing the softness of his skin on my lips.  The warmth from the crook of his neck against my face is pure heaven.  Ty looked up to the sky the entire time and I think he was getting lost in the beauty of the leaves in the trees and the clouds above.  It was very special and I hope there is a lot more nuzzling in my future. 
 
For over a week, Ty hasn't been able to tolerate being held or moved around much.  He hasn't even sat upright since last Saturday.  Today, both of those things changed out of the blue.  Ty's secretions have changed from a constant drool to a deeper cough.  Neither of which are comfortable for him, but since the drooling has diminished he has been able to breathe a bit better in the upright position.  I can only imagine how good it must have felt for him to sit up on the couch for 1/2 hour or so.  I could have carried him all day without a single ache or cramp.  I have been carrying him for so long, my back and shoulders were always burning.  The pain was constant.  After this week-long break I didn't feel anything but pure joy and comfort with him in my arms. 
 


I mentioned that he wasn't happy much today, but that's okay.  He wasn't overly sad, either.  I think he is a little uncomfortable, a little bored, a little confused and a little pissed off.  He gets so angry when we can't understand what he's trying to say.  And, with the increase in morphine it only makes him slur his words more and it alters his mental status a little so he might say things that are even harder to decipher.  This is our biggest challenge. 

Then there is his desire to eat.  The last thing Ty put in his mouth was a tiny sip of a strawberry milkshake last Friday (at the Palace Diner - hello Marist!).  Yesterday he mentioned that he was hungry and wanted to eat something for the first time since then, but the lollipop lick that I offered (because his weak swallow can't tolerate any real food) just wasn't appealing.  Today, however, he did try it a few times.  He seems to still enjoy the sweetness of candy, but his ability to lick and taste is so incredibly limited.  Instead we started using the "green sponge in ice" to wet his mouth and make him more comfortable.  Anyone who has cared for someone in a hospital setting probably knows what I'm talking about.  The green sponge today reminded me how far we have come on this journey.  I used them a lot back in September and October of 2010 - when Ty came out of surgery with glue coating his throat and again when the chemo destroyed the protective lining in his mouth and throat.  I brought home a slew of them and never really needed them since.  Even when Ty had thrush or other common side effects from treatment - he always hated and refused the green sponge.  Now he asks for it and it is bittersweet.  He isn't fighting me about it anymore, he has embraced it. 

Why is cancer allowed to happen to children?  My son has been through so much.  SO MUCH!  He is a miracle among us.  I am so grateful for him and I will never stop asking for one more miracle... never... but unless he's going to walk off that couch and be freed from pain for the rest of his time here on Earth, then he deserves all of the pure beauty that is waiting for him on the other side.  Please don't let his suffering drag on any further.  I want to enjoy every moment we have left with Ty, but I'm so scared that it is going to get harder and harder for us to keep him smiling - and that is what he deserves.  Ear-to-ear smiles for eternity.  Nothing but pure happiness for our sweet, loving boy.


Ty in his hospital gown on September 15
I hope I'm wrong, but I think he is just too good to stay.  He always has been.  For two years we begged to keep him here.  We held on for so long.  This is just so, so hard.  My pain is indescribable.  I am riddled with guilt for giving up and letting go, yet at the same time I'm riddled with guilt for making him fight such a long, treacherous battle for so long.  At the end of the day, I go to bed convincing myself that everything has followed the course it was supposed to.  I'll never understand why, but I pray that I have been a good mommy and I thank God every day for trusting me to care for such an incredible little boy who is too good for this world.  Thank you so much for your beautiful, soothing words.  Your comments have been so helpful to Lou and I during our worst days.

Saturday, September 22, 2012

I was happily living life with blinders on for so long.  I didn't know how great everything was until I look back and yearn for my stressful, overworked with two small babies life.  If I knew then, I wouldn't have been stressed.  Or overworked.  I would have known how important it is to have balance.  I also would have been aware of how many things around me are happening on purpose.  My eyes would have been open to the everyday signs that are more obvious to me now.  In the weather, in the things I read at random, in the things I spot in nature and in the spontaneous actions of the day. 

There are people who are more aware of the world, in it's entirety, than others.  During our last hospital stay, soon after we received news about Ty's progressive disease, I stepped out to use the bathroom and spotted Lou talking with a stranger down the hall.  He was gone for a while, and I thought "oh boy, I wonder what that's all about."  Later, I was walking down the hall with my sunglasses on - feeling inconspicuous - when I was stopped by the same individual.  She was working at the front desk.  She told me she isn't looped in on what our child's situation is, but that she felt a strong need to share her own experiences with me.  "Here we go," I thought.  "What could she possibly know about what I'm going through?"

Instead of something totally irrelevant to my situation, or something religious that may or may not ring true for me, this young woman proceeded to share with me her perspective on life and death.  Everything she told me was so perfectly aligned with what I was struggling with in my own head at that exact moment that I have to believe she had some sense of the conflicting thoughts that were racing through my mind.  She briefly explained her own hardships and her daughter's poor health.  How she has been brought to her knees in sadness, doubt and confusion.  She pinched the skin on her arm and she said... "This?  This is nothing.  We are all so much more than this.  That?  The sadness that is happening in that room?  That is yours, not his.  He is so great beyond words.  Too great for us to even comprehend."  "I know," I answered, and she said "I know you know."

I didn't mention it to Lou because things were so busy when I returned to the room.  Later that night he asked me if he saw me talking to a young girl in the hallway.  I told him yes, and that I had spoken to her too.  "Oh yeah?  He said.  "I liked her, did you?  She said so many things that were so weirdly connected with all we've been through.  I feel like she was sending us a message or something."  I think so, too. 

Ty had a great day yesterday, and a pretty good day today up until the late afternoon.  Yesterday his best friend Eva came for a visit (accompanied with her parents who are great friends of ours).  Afterward, Lou and I agreed that for all that's going on it felt as nice and normal as possible.  Ty was so happy to have his friend over.  Of course they couldn't play together, but she brought him gifts and candy and she wrote a note that she read aloud, "To Ty, I love you, Love Eva." Then she added, "I wrote that because I love Ty!"  We caught a big grin when Eva was standing in front of Ty on the couch, and then a nice group kiss among Eva, Ty and Gavin (who was dressed up like Thor all day and preferred to be addressed by the name Thor, only). 

 


I mentioned yesterday how I am so worried that I will begin to forget.  Then again, how is that even possible.  He is part of every single object that surrounds me in this house.  I am especially obsessed over what will happen with Ty.  To the biological piece of him.  When I change his pillowcase I actually contemplate over keeping the dirty one (instead of putting it in the wash) because I don't want to clean it of Ty's physical presence.  I took a picture of his feet because I want to still be able to kiss that perfectly adorable freckle on his big toe like I've been doing since the day he was born.



At the same time I am experiencing a very strange need to clean and organize.  I don't have time for it, though, because I am so busy caring for Ty, which is stressing me out.  When I open the cabinet, for example, I see all the jars of baby food and supplements I bought to help keep his nutrition perfect.  Now that I am advised not to use most of it, I feel I just can't wait to get it out of here.  I don't want to see these kinds of reminders of when things were better.  Reminders that I am not fighting anymore.  I took Ty's adorable Calvin Klein underpants out and they have been sitting on my dresser for days.  Is it so morbid for me to think that I want him to be wearing them after he dies?  I bought a slew of new school clothes for Ty - comfy yet cool stuff - so he can ride around in his wheelchair in style.  I put them in a pile to have some one get them out of my sight and return them to the store or give to a charity.  He is still here, why am I doing this?  It is like reverse nesting and I can't stop this desire to keep cleaning.  I hate it, it's not a good feeling. 

Please understand that this does not, in any way, mean I've given up hope.  There is no such thing as false hope or blind hope - those are oxymoron's.  I will hope.  Always.  But I have given up trying to control this disgusting cancer anymore. I lay in bed with Ty and I recite Psalm 23 because it helps me. 

The sad truth about laying in bed with Ty is that I can't really do it anymore.  As soon as those arms go around my neck the tears are flowing so bad that I soak his pillow.  the poor kid is trying to sleep and I can't get a hold of myself.  I keep annoying him by kissing him on those delicious lips.  Breathing in his sweet breath and holding it in as if I can keep this part of him with me forever.  The night time is when the house is quiet and I am alone in my head.  Instead of falling asleep with Ty, I usually sneak off downstairs so I can write this blog or do the dishes.  It helps me so much to release some of the thoughts that would otherwise consume my mind when I'm trying to sleep.  Then it is easier to climb in late night and get a couple of hours in. 

Physically, Ty is still doing pretty well.  His eyes are always crossing on and off which makes me sad because it probably limits him as to what he can see - especially when I'm reading a book or putting on his favorite TV shows.  He has some very quick upswings where he is filled with smiles and laughter, but those can easily come crashing down at any given time and he is instead riddled with anxiety and he tells us through his tears "I just sad."  We are going to try to address this with medicine because he needs to be more comfortable.  His pain is under control and it's really not bad all things considered.  All in all, Ty is doing well.  I am not just being positive.  Clinically, he really is doing pretty darn good.  I don't usually like to share photos when his eyes are crossed, but this one was just so cute (and it's barely noticeable).  He is laughing out loud and pulling his head up to witness whatever funny activity was taking place.  This is a very strong maneuver for his very weak neck so you can only imagine my surprise.  You never know, maybe he will just get stronger with each passing day and I can't even say I would be all that surprised :) 


Goodnight and thank you all SO much for your amazing comments.  I promise I read them, and I love them.  They are so comforting.  I will also try to respond to your thoughtful emails over the course of a few days.  Thanks again, it means so much to all of us. 

Cindy

Thursday, September 20, 2012

All fresh and clean

I wish I saw this coming sooner.  Maybe I did.   For the past three weeks I had been feeling so incredibly heavy. I can't explain it, I was just sad, sad, sad... before anything really changed in Ty's clinical condition (and that is out of character for me, to get so down in the dumps).  I wonder if it was my instinct knowing that the other shoe was about to drop. I debated whether or not we were doing right by Ty with every dose of chemo I administered. I watched him on the couch, unable to feed himself or hold his head up and I thought, "if this doesn't get better for him, what are we fighting for?" The next thing I know we are rushing back to the hospital on Saturday worried about intercranial pressure and another possible shunt failure. It all happened so fast.  When I think about all of the things I want to still do with him I get lost in a fog of regret.  Why didn't we just take him to the Bronx Zoo instead of talking about it all the time? 

And it's not just the big things that I want more time for.  Do you know that I can't remember my last trip to the supermarket with Ty?  It's making me insane.  Like trying to remember what you had for lunch yesterday.  The supermarket was his favorite thing (until it was replaced by the Candy Store).  It was practically a daily ritual.  How come I can't remember it?  Who was at the register?  What candy did he pick from the candy aisle?  I don't know!!!  I want pictures of it.  I want to remember every second of our last trip to the supermarket and I just can't.  This terrifies me because it makes me think that all of these precious minutes with him will fade away from my memory like yesterday's lunch.  What a horrible thought. I don't want to be left with the painful memories that I wish I could forget.  I want to remember the supermarket. 

I have been taking a lot of pictures since we got home, that's for sure.  I also came across a half-eaten lollipop in my fridge (to avoid ants in the cabinets, I put open candy in the fridge).  I know it's silly, but I kept it there for Ty.  Not just so he can eat it some day, but because his adorable little mouth was wrapped around it at one time and i wanted to hold onto that.   

Today I gave Ty a bath.  Everyone was worried about the idea whenever I mentioned it these past few days (because of his trouble breathing), but I just had to do it.  I am his mother and I just needed to get that little man of mine submerged in some warm water.  I needed his beautiful body to be fresh and clean after days upon days sweating and drooling.  I needed to feel his warm, clean skin.  I needed to wash off the damn glue that was all over his chest and abdomen since we pulled off the sticky leeds after our stay in the PICU (and several other bandages). 

When I suggested it to Ty, he refused at first (this is almost always his reaction).  Then I told him I would take his bath chair into Mommy's big tub instead, to which he smiled and whispered "I want to play with my cars."  Ty has a bath toy that floats on water and has ramps for his Hot Wheels to fly down and into a little plastic boat.  I used to let him and Gavin play with it together whenever they took a bubble bath in my tub (a special treat).  He hasn't been able to play with it, nor has he asked for it, in about six months.  I was very uncertain how it would all work out, but I prepared his tub and set up his car set.  I don't think that this will be his last bath, but I don't know for sure and I certainly won't deny him anything.  Bathtime was totally stressful, but all-in-all it was a success.  First I relished in caressing his skin with my best baby soaps.  Then I helped him to drop his cars down the ramps and caught them in the plastic boat for the grand finale.  My beautiful, clean boy.  Can you smell him?  Pure heaven.  I put nana blankie in the washer/dryer too.  All nice and fluffy for my Ty.  Bathtime was a blessing.  It always has been my favorite time of the day with my boys (granted, sometimes after a long day at work bathtime also meant it was late enough for my first glass of wine, but hey - gotta love bathtime). 

Simply delicious.  Like warm apple pie.


Did I mention that I lost my bracelet? For over a year I have been wearing a beautiful bracelet with a heart that is engraved with the words "Keep Fighting." This bracelet was given to me by my closest friend Caryn and it was pure magic. It would always catch my eye during my most difficult days and remind me that I have to be strong. There was another time where I thought I lost it and it appeared in the most unusual place just as I was having doubts over some important decisions we were making. Magic.  This time, it wasn't until we were settled into the PICU for another sleepless night that I noticed the bracelet was gone. I didn't mention it to anyone, but I was very aware of the sign it was sending. I just didn't want to believe it.  I don't expect to find it this time, but you never know. 

I believe so much in signs like this, so I wasn't even surprised when I arrived home to a package with a new bracelet inside just for me.  This time, a beautiful rosary bracelet from a great friend I have yet to meet but who I feel I've known forever.  What a fitting and comforting replacement. 

I want to tell you about our visit with Hospice today, but I will wait until tomorrow.  Today it wasn't the nurse who visited, it was the case manager.  I didn't realize this until she explained the process to me.  When I saw her face, I immediately recognized her from 2010.  She was warm and knowledgeable but I probably won't ever see her again.  I will be meeting his nurse tomorrow and I hope she is the right person to accompany us through all of this.  Before leaving, the case manager did examine Ty.  She said that his lungs are beginning to fill up with fluid, which was a shock to me because as of Monday his lungs were clear.  She assured me, though, that I shouldn't worry too much about it.  His vitals are very strong and he looks really good. 

I am so tired.  I should just go upstairs and lay down with Ty and Lou.  I hope that Lou and I get some sleep tonight.  Ever since this started with Ty's breathing, we pretty much lay in bed with him, eyes wide open, listening to him breathing all night long.  How can we possibly sleep when we are so afraid of him choking.  It's such a horrible feeling.  Lou has been up there with him for a couple of hours already and when I went in to give Ty his medicine Lou whispered to me, "What are we going to do?"  Knowing he was referring to losing Ty, I answered:

"We are going to keep living even though we're half dead."

Wednesday, September 19, 2012

Ty Loves Life

Yesterday was pouring rain for the entire day.  It was so fitting, I loved it.  After I picked up Gavin from pre-school it had eased up into a slight drizzle and Gavin ran off into our backyard instead of into the house like he was supposed to.  He found a big 'ole puddle in the walkway and started jumping like crazy.  As you know well, jumping in muddy puddles is something that Ty has been talking about doing for over a year now.  Lou and I told Ty that he will finally be able to do that soon. My only regret is that I had to drag Gavin inside before he was ready to stop playing because I was so eager to get back to Ty's side. 

Let your kids jump in muddy puddles whenever they want.  Soon they'll be all grown up and see the wet pants and wet shoes as nothing but a nuisance.  It's beautiful that children can find such joy in the simple things that we no longer appreciate as adults.  I hope I never forget that.  I couldn't truly enjoy watching Gavin have fun in the rain because I am so burdened by sadness, but at the same time I am grateful to be so aware of what is really special and important.  I didn't think in the midst of my grief that I would be able to appreciate beauty, and instead it is amplified.  I see it in the clouds, the trees, the wind, the stars... everything.  The world around me and the overwhelming kindness that has been expressed through spoken words, written words, actions and a simple nod or smile from an acquaintance is what is keeping me balanced.  Just be forewarned that if you give me a hug, I'm probably gonna start to cry.  I'm totally okay with it if you are :)

Late last night, after the house was clean and ready for the final "lights out", we discovered this small gift left by Gavin.  It's hard to see, but this is his Jessie doll (from Toy Story) in the sink in his play kitchen.  Watching Gavin play is one of the funniest things in the world.  Some kids are just so great at playing with toys.  He's not into cars or building blocks, but he spends hours on end acting out imaginary scenes with his toys.  I love it. 

Jessie is upside-down with her legs split for balance

Tomorrow we will meet with Ty's hospice nurse for the first time.  This will be the second time I had hospice in our home - the first time was December 2010.  At that time, Ty was also diagnosed with lepto-meningial disease and given 4-6 weeks to live based on the progression that was seen over the course of a month.  What a miracle it is that we were granted almost two more years with him.  As I said in my last post, I'm always praying for another miracle, but I still have to acknowledge that I have already been blessed with one. 

Ty back in December 2010 - how much he has GROWN!

 
Ty going to nursery school last year is my happiest accomplishment for him since he became tortured by cancer.  It was so cute and normal and he enjoyed it so much.  His teachers came by for a visit today and he was such a good boy.  So happy to see them.  I wonder what he's thinking, though.  If he ever wonders why he isn't getting better.  If he longs to be back in school with all of his little friends.  Based on the fact that this kid keeps on smiling despite every brick thrown at him, I believe he understands more about what is happening than we do.  Just look at this face.  He is one special little boy, laughing at his brother who was running around in front of him instead of feeling sad that he can't do the same.  Always.

 

So many things race through my mind, I wish I could keep track.  Sorry if my thoughts are all over the place tonight. 

Today I realized that after riding around with Ty in my back seat for hours and hours every single day for years, watching him in my rearview mirror almost as much as I watch the road in front of me... he probably won't ever ride in my car again.  I can't take him anywhere at all, and it is so surreal to look in my mirror now and find an empty seat, or Gavin... alone.  I see the head supports and his neck brace that we've become so accustomed to and it is so strange to think I don't need them anymore.  Because Ty is dying.  Is that really happening?  It can't be.  No more trips to the supermarket.  No more candy stores.  No more anywhere.  We can't even take a walk outside because he can't tolerate being moved (it gives him pain) and he can't breathe unless he is lying flat and on his side so that the secretions he can no longer swallow can easily drain out of his mouth. 

Slowly, cancer has robbed Ty of everything that he loves.  First, it robbed him of his home.  We had to move upstate away from the ocean, his playground on the boardwalk and all of his friends.  Granted, he has a beautiful home and he is happy here, but it was an adjustment that I'm sure he didn't understand at the time.  Then, the simple concept of "home" was taken from him too, when you consider that he spent over 200 nights in a hospital bed.  His ability to speak became compromised very early on, as did his eating and drinking.  He became too weak to walk only two months into treatment.  Steroids made him so upset he wanted to jump out of his skin, and they made him completely incapable of sleeping at night because he was so agitated.  The chemo made him throw up constantly and lose his golden curls.  The countless infections forced us to live in a bubble.  He suffered headpain that I can only describe as wicked, cruel, vile and evil.  One by one, all of the joys in his life were taken away from him.  After he worked so hard on his physical recovery, late effects of radiation left him paralyzed from the head down.  When he could no longer play with his toys, he fell in love with candy.  As of five days ago, he can't even lick a lollipop without a choking effect. 

Regardless.  Last night his brother was dressed up like superheroes and playing around the house.  When I stripped him of Ty's old Iron Man costume, I was surprised when Ty whispered "I want to wear that."  I draped it over him to make pretend he was wearing it and just look at this grin.  He truly is UN-friggin'-BELIEVABLE!  No self pity here.  We have so much to learn from Ty Louis Campbell, I swear.  Live life to the fullest and love every minute of it.  He does despite all he's been through and all he is going through right now. 


Your comments have been so thoughtful and kind.  I can't even begin to tell you how much it means to me and to Lou.  Thank you so much for loving Ty and our family.  You are helping us more than you know just by reaching out with your supportive words and prayers.  Thank you from the bottoms of our hearts. 

PS - I want to find a little boy who could really benefit from Ty's wheelchair.  It is brand new.  He sat in it only once at home.  If you know someone, please inbox me at tylouiscampbell@gmail.com

Monday, September 17, 2012

Our aching hearts


My face is swollen.  My eyes are heavy.  I have been crying for what feels like an eternity.  But in
between my tears, I have an overwhelming sense of freedom.  Today we were told that there are no more treatment options for Ty.  That his MRI Saturday night shows progressive lepto-meningial disease in three different areas.  Lou and I decided against surgery to fix Ty's shunt, and I am finally free from feeling responsible for whether or not he lives or dies.  Ty is in God's hands.

No matter how many times I swore that I leave Ty in God's hands, I was always clinging onto him with every ounce of my being.  Researching.  Fighting.  Begging.  Doing anything in my power to find a way to save him.  Finally, I have exhausted my options and I am letting go.  I may be kicking and screaming, but I am still loosening my grip because I know that I have to.  We have tried so hard, for so long.  Ty's doctors and nurses, they are so special.  They have given us beautiful. precious time with Ty and for that I am so grateful.  But he has suffered so much and I just can't allow that anymore.  Maybe this time is what I needed to learn and to find the ability to say "no more." 

I need to make one thing very clear.  Letting go does not mean giving up or losing faith or abandoning hope. I know it sounds that way but I still smile at the thought of Ty sitting up and saying something like "why are you all crying, I'm fine!"  I swear to you when I tell you that I believe this is still a possibility and I'm not even sure I would be surprised after all that has happened.  In fact... well... I'll save the latest updates for the end. 

There are three things happening here.... First and worst, Lou and I are grieving for the impending loss of our son.  We are in unimaginable pain, and we know it is only going to get worse.  I can only compare it to when I was pregnant.  We were so in love and so excited for our baby, but we had no idea just HOW MUCH we would love that baby until he was born.  It's crazy how your heart just explodes with something that is impossible to put into words.  I realize that I am currently in a place that is the polar opposite.  I am waiting for my child to die.  And I am utterly devastated beyond words and I know I will be even worse off when the time comes.... but the pain of him really leaving us will be something that is incomprehensible even to us, regardless of all we have seen and suffered through already.  I will forever be a fraction of myself.  A walking zombie.  A very, very broken person.  When I try to imagine my life without him I get lost in a fog of pure grief.  How am I going to do this?  How am I going to be a good Momma to Gavin, who deserves so much.  And what will he make of all this?  Can I take Gavin to the Bronx Zoo without crying my eyes out because I never got to take Ty?  Will his first Little League game be nothing but sadness for me because Ty never got to wear that adorable football uniform that Lou has been training him for since he was born?

Gavin at Aunt Debi's house yesterday

The second thing that's happening in our life right now is... Holy Sh*t... Ty is dying and we are here, in our own house, armed with only a suction machine, some morphine, and a phone number for an on-call hospice nurse.  In fact, an hour ago Lou called my cell phone from upstairs in the bedroom so that he could tell me he needed the suction machine immediately.  He didn't want to scream and panic and wake up Gavin, but Ty was unable to breathe because his secretions were blocking his airway.  We rushed, we freaked out, we fumbled, but we fixed it.  We were a good team, and afterward poor Lou had to hold his head and pace the floor a good twenty times before he could get back in bed next to Ty and try to fall asleep again.  We aren't sure we are up for this.  Our wonderful doctors and nurses at Memorial Sloan Kettering have urged us to come back anytime we feel overwhelmed, but we want to have him home at all costs.  I hope we can.

The third thing is, what if they are wrong again?  Lepto-menigial disease.  We have heard that before.  We signed up with hospice before.  We have seen Ty through miraculous recoveries and we believe in miracles.  Our faith has never wavered.  In fact, our understanding of unified, unwavering love for everything in this beautiful world that God gave us has only grown stronger.  Our perception of what's important in life has changed and made us so much better. 


Ty's scan showed that he was suffering from hydrocephalus on Saturday.  His ventricles were enlarged, the shunt was malfunctioning.  When the MRI showed progressive disease, all of the recent problems with his shunt finally made sense because an increase in proteins within the CSF fluid (which would happen if disease was present), or the presence of any cancer cells within the CSF (which often goes hand-in-hand with lepto-menigial disease) would change the consistency of the fluid and cause clogs.  Wouldn't you know it!  In typical Ty fashion, a sample of his CSF was sent to the lab and it was later determined that the level of protein found was very low... and the cytology (a close examination of the types of cells "floating around in there") showed no signs of cancer cells.  Ty's clinical state has been improving since we got home and his eyes that were severely crossed as of this morning were almost 100% back to normal when we put him to bed tonight.  That tells us that his shunt is working again.  And.. that maybe, just maybe, another miracle is in the works...

I can't even tell you how overwhelmed Lou and I are.  Your love and prayers and positive thoughts lift us up and keep us strong.  We receive, read and share amongst each other each and every message.  Thank you, thank you, thank you. 

Over the past week there have been a couple of "signs" that have helped me through.  I hope to have time to share them with you in detail tomorrow :)

Waiting for more answers tomorrow. Maybe.

I am so tired from crying.  I am physically and emotionally drained.  Today I sat at Ty's bedside in the PICU begging God to stop your suffering, even if that means we have to let you go.  I have done this several times before.  After watching Ty get beat up and knocked out time and time again over two years, I can't even count how many times I have had this conversation with God.  Both Lou and I talk about this all the time.  Of course, we will never stop fighting for you.  Of course we want you to live, to be with us.  Of course.  But, if it means you are hurting all the time.  If it means you won't live a happy life, then what are we fighting for?

We had another very difficult conversation with Ty's neurosurgeon today.  Let me back up to yesterday.

Last I posted, we were in urgent care.  Ty's breathing and congestion wasn't improving and he tested negative for any common viruses or bacterias like the flu or the common cold.  His eyes were crossed.  That almost always indicates intracranial pressure - and that often means another shunt malfunction.  Well, the CT indeed showed Ty was suffering from hydrocephalus again.  Lou and I were at the end of our ropes.  We insisted on an MRI before making any more decisions about shunt surgery (not an easy accomplishment in the middle of the night on the weekend, but if you push hard enough it happens).  As of today, the results are not what we hoped for, but they are still ambiguous enough that we are choosing to consider it "inconclusive" until the regular team is in tomorrow.  They are familiar with Ty's scans, the necrosis that took place in March/April, and they are better equipped to differentiate between tumor and necrotic tissue.  However, our neurosurgeon is concerned that he may see new tumor growth in the brainstem area (but not 100% certain).

That led us to another conversation in a conference room about what we should do.  Just imagine this.  He was so gentle in explaining what Ty's near future may hold, but no matter how it is worded, we may face some of the most painful scenarios imaginable for any parent.  If there IS new tumor growth, we can decide to either 1) leave the shunt as it is and allow the hydrocephalus to take over.  This means he would end up sleeping more and more with each passing day, hopefully without much pain, until he soon doesn't wake up.  2) we can fix the shunt knowing that Ty's breathing will probably get worse and worse because of the tumor until he ultimately cannot breathe without a ventilator (something Lou and I are against) or 3) perhaps he can perform a biopsy through Ty's nose (another painful surgery) to see if there are any brain tumor vaccine trials that can use a tumor tissue sample to pursue a vaccine (this alternative is a stretch - I have done a lot of research with the help of a friend and I don't think vaccines have been successful when tumor is present - it is more of a maintenance care alternative to chemotherapy). 

My mind and my actions have been racing out of control today.  One minute I'm standing at the East River thinking about how nice it would be to jump in and swim away for a while.  The next I am yelling to myself as I walk down the city streets.  Then I'm sitting in church drenched with tears telling God how I trust him (I always have, but that doesn't always help the pain).  I laid in bed with Ty for an hour, whispering in his ear that he can get better.  I made him a car out of cardboard and hospital tape so we can cover it with candy.  I feel certain he is going to die, then minutes later I am certain that he won't.  I feel like we may even walk out of the meeting tomorrow after hearing the worst, and Ty will still do otherwise just like he's done in the past. Prove everyone wrong.  One thing is for sure. I am not giving up hope, don't worry. 

What drives me crazy is this.  I have seen Ty recover in ways that can ONLY be described as miraculous, and Ty's doctors will back me up on this.  If Ty is going to do this... if he is going to beat the odds and be the miracle... then let him.  If not?  Why have those amazing feats been granted if they only ended up causing him more pain and suffering over these past two years.  Why was he saved in December 2010 when he was diagnosed with lepto-meningeal disease (which is always terminal), in Feb. 2011 when his brainstem tumor grew back larger than the original, in June 2011 when he had two new tumors the size of golf balls in his Cerebellum, in December 2011 when he suffered a stroke-like brain bleed and in April 2012 when he was suffering from radiation necrosis that is supposed to be incurable and irreversible???  He has come so far.  I can't imagine the "plan" is for him to die in the end.  I just can't.  But today, knowing what I know, I began to try and accept that possibility again. 

What would I do without him?  Ty and me... we are connected... one in the same.  We are together every minute of every day.  He is 99% of me and he is everything that makes me who I am.  Please pray for him.  Please share his story.