Thursday, December 29, 2011

MRI Details

Okay.  Exhale.  But don't get too comfortable, because there is always an ounce of uncertainty in the doctor's eyes.  I hate that.  Nothing can ever be 100% (I'll explain), but obviously no visible cancer on Ty's MRI is absolutely amazing news.  We are so grateful and so relieved.  Thank you all SO MUCH for your prayers and support.  As always, it helped us through the anxiety and helped Ty remain cancer free.  Six months!  May he remain cancer-free forever.  Thanks be to God. 

We were told that what appears on the scan was most likely the result of an isolated incident where Ty had a small hemorrhage near the brainstem, causing stroke-like symptoms.  The hemorrhage is believed to be a delayed, but not uncommon side effect from radiation.  Although he completed his radiation more than six months ago, Ty's brain is still healing from the trauma and as it heals there is evidence of several small, sporadic bleeds within the brain.  This is normal and expected.  Unfortunately, when something like this happens in the brainstem area where Ty has already undergone so much... the effect can be more noticeable and it will take a long time for him to recover physically.  Possibly two to three months before we see any improvement on his left side.  So sad!  Especially considering how far he has come, he was oh so close to walking again.  This is a major setback with regard to his physical recovery, but we'll take it.  As long as it isn't cancer, it isn't deadly, and it isn't permanent - we are thrilled. 

Now for the tiny, invisible gnat that remains hovering in front of my face.  Flying back and forth, too close to my eyes and in and out of my ears.  The results from the MRI weren't delivered without a shadow of a doubt.  There is still a possibility that what we're seeing is the early stages of tumor activity near Ty's brainstem, but our neuro-oncologist and neuro-radio oncologist were very confident that it was treatment effect - not cancer.  They both agree that the slightly highlighted areas in the brainstem area represent swelling, not tumor, and that Ty will be able to recover from the side effects over time.  However, when we ask "how do you know for sure that it isn't tumor?" the answer is simply, "we don't."  That one comment in the context of an otherwise joyous and jubilant conversation stabbed me in the gut where it remains as a reminder that we aren't out of the woods yet.  But... we are doing great navigating our way through the forest.  Beyond great.

Several people have asked me what Ty's prognosis is now that he has had several clean scans.  I'm not sure how to answer that question, and I don't think his doctors would have a definitive answer either.  I am confident that he is going to beat this... that he has beat this... that he will never, ever, ever have cancer again.  There are no documented cases like Ty's, so our doctors can't really be sure how his cancer will react to treatment.  We follow protocols for similar tumor types, but there is always the question of whether Ty's tumor behaves more like a sarcoma (a type of tumor that develops from bone or muscle) or an AT/RT (a tumor that develops from brain tissue).  His official pathology is a malignant rhabdoid tumor that originated from bone and later metastasized into the brain. 

I read somewhere that an AT/RT patient isn't considered cured until they show clean scans for FIVE YEARS without any evidence of disease because recurrence is so common.  That scares me to death, but what else can I do but hope and pray with every ounce of my soul that Ty has beaten this once and for all.  That's it.  Be happy with today and enjoy every minute I have with my special boys.  And, in five years - four and a half, actually - I will finally shout from the rooftops that Ty is cured!  I hope you are all still following us at that time and not bored :) That sounds so far from now, but when I think that it has been six months already I realize how incredibly fast time is flying now that Ty is feeling "bedda".  Time stood still when he was sick.  It feels like yesterday and I remember every excruciating moment.  Now that he is better, the days are filled with fun and laughter and they are zipping by all too fast!!  I need to take more pictures :)  I am so blessed. 

Thank you all, as always, for everything.  I am the luckiest person on the planet.  Today was indeed a good day.   


 

Wednesday, December 28, 2011

Scared to death

We got the call to confirm this afternoon.  Ty's MRI is scheduled for 8:30AM tomorrow, which means we will leave the house around 6:00 so we can get there an hour early for anesthesia clearance.  I feel so, so sick.  I can't wait for tomorrow to be over, and I don't want it to ever come. 

In the meantime, we have been passing time by playing with our new treasures. It isn't Christmas without a new Hess Truck (this one has a jet plane attached!), and Gavin loves this crazy bouncy reindeer toy that Aunt Lynda and Uncle Rudy found for him.  He's obsessed, it's really cute.  In fact, tonight he tried to pull him up onto his high chair so they could eat fish sticks together. 

This picture was taken before Ty's weakness set in on his left side


Gavin, his crazy hair, and his Reindeer

We had a really nice day today doing ordinary things under the most extraordinary circumstances.  Cleaning the house, playing games, opening new toys, building race tracks for our new Hot Wheels...  but I can't help my mind from wandering into a whirlwind of worry and darkness.  When I see how limp Ty's left arm is.  When I watch him scoot over to his toys with less than half the strength and stability he had two weeks ago.  Aargh!  My skin is just crawling!!! I am scared to death. LEAVE HIM ALONE!  Please don't let this be cancer.  Anything but cancer.  My poor baby boy.  He should be walking by now.  He should be building up his strength so he can play on a playground this Spring.  He should be getting stronger every day, not weaker.  It's just so f*#&ing unfair.  Why is this happening to him?  But, you would all be so proud if you could see him.  He has an unbreakable spirit and he remains happy and giggly despite this setback.  I aspire to show even a small percentage of the same strength, confidence and courage that he has.  He is my superhero and he won't let this get him down. 

 

Two of our friends drove up from the city to spend the evening with us and that was a tremendous help.  It forced us to stay positive and to try and allow our minds to forget about tomorrow for a while.  We stepped out for a quick dinner and I was relieved to talk about things other than pediatric cancer and MRIs over a delicious meal.  Unfortunately, I want to throw up every last bite right now.  Every time I stand up I feel disgustingly nauseous.  I have a headache from involuntarily clenching my teeth all day.  My stomach is cramping. I am such a wreck, I can't stand it, but I am staying strong for Ty.  I share only smiles and laughter with Ty and Gavin because that is what they need to be surrounded by.  Not my fears and my worries.  I hold onto all of that until I have a chance to spill my guts here.     

Colleen has upped the ante from 500,000 to one million angels.  That's how many she tells me will fill the room tomorrow.  One million plus one... two... three... That is what I envision as we leave our sleeping baby in the "cold room".  That more and more angels are squeezing in as the door closes.  That they fill every bit of air in the room and lay over my baby in a blanket of light.  It gives me so much comfort, that vision.  As Father Jordan said last Wednesday, "he is going to be okay." 

We have received a few new gifts in advance of this MRI that I will be bringing with me tomorrow (along with the dozens of other items I bring to the hospital when I am most worried).  A "miracle" star, a lucky ladybug from a little girl that has a great story behind it, and the most beautiful bracelet I have ever owned.  My neighbor made it just for me and it is so special.  It's a charm bracelet filled with saint medals and spiritual charms - some old, some new.  It makes a lot of jingly noise, which I love, and I will add some of my own charms to it soon (including the "keep fighting" charm that I wear every day and the Saint Peregrine medal that I pin to Ty's clothing sometimes).  All of these things help to bring me peace while we sit and wait for the results. 

Ty and Gavin are so lucky and so loved.  They have gotten some very, very special care packages this holiday season, and I want to take a second to thank everyone.  I can't tell you how special it is to see Ty's face light up when a package arrives.  He is always so excited and so grateful.  One fun thing that was included in a great big package from friends in Texas - because everything is big in Texas ;) - was a package of wish paper.  We had never seen this before.  In the note, our friend suggested we use the wish paper on New Year's Eve, but I felt tonight was even more appropriate.  We wrote several wishes down for a clean MRI tomorrow and always, we wished for a cure for cancer, Ty wished for "no more cancer" and, of course, candy.  Then we rolled up the paper, lit it on fire, and "POOF" watched it float into the sky and disappear.  Our wishes went up to heaven :)  I truly believe they did!!  Here's Ty participating in the fun.  You can see a floating, burning wish up in the corner on the last photo.  Ty was watching it float away in awe.  It was really a lot of fun. 




Isn't he looking like such a big boy!?!  I am amazed at these pictures and I see him every second of every day!  Before I sign off for the night, I want to leave you with these positive truths.  I believe that Ty remains cancer free and that the MRI will prove just that.  I believe that he is suffering because the daily chemotherapy is making him weak and that's all. 

I believe in our love, and the power behind it.  I believe that we can move mountains together.  I believe that our souls are intertwined.  I believe that he is a miracle and I am so happy he is mine. 

I am off to go snuggle up to my sleeping boy, hold his warm hand in mine, run my fingers across his head and stare at his soft, peaceful face for the next five hours until we leave for the hospital.  Love him so much.   Thank you for all of your love and support. 

 

Monday, December 26, 2011

Blessed

We are so blessed and lucky.  This Christmas was perfect.  Ty and Gavin had the time of their lives and we had so much fun watching them.  We went to Lou's parent's house for Christmas eve, then drove to my parent's house on Christmas morning.  We were surrounded by family both days and we all shared a lot of much needed laughs. 

The first two pictures are my handsome boys all dressed up for the holidays. 



Despite his weakness on the left side, Ty has been in amazing spirits.  Must be all the joy and celebrating that Christmas brings :)  He has been so happy, and he looks sooo good.  It's not just me, everyone agrees.  The fact that he is happy and without pain or nausea helps me to feel confident that the MRI on Thursday will remain clean.  It simply has to.  I don't know what could be causing his setbacks, but I have to think that all of the heavy duty medicine we are pumping our poor little guy with on a daily basis can't help.  On Wednesday his fifth cycle of oral chemo will be complete and we will begin the sixth cycle which includes Cytoxin and Celebrex in place of the Etoposide/Accutane he is on right now.  Hopefully the switch in medication will help his strength to improve.  Maybe we can even take a week or two off before the next cycle to help him recover.

BTW - Ty picked out the most perfect Christmas tree this year.  Here it is on Christmas Eve, after Santa came for a visit.  So exciting!!



There were some great presents under the tree this Christmas, but you all know that the greatest gift of all was hearing Ty's voice and laughter fill the room.  We put out cookies and chocolate milk (because Ty thinks Max and Ruby were right - Santa probably prefers chocolate).  In the morning Ty was so excited to see the footprints from the fireplace, the crumbs left on the cookie plate, the stockings filled to the brim and, of course, the presents!!  He calls Christmas "chrismy" and he calls presents "pennies".  Ty, you are my best Chrismy Penny ever.   You, your daddy and your brother are my whole world.  Below are the boys with their favorites.  Ty got an old fashioned robot just like Max, and Gavin got a bunch of Toy Story toys, including Jessie.   




It's always a little sad when Christmas is officially over.  We saw my brother and family for brunch this morning before heading back home from Long Island and now we are watching Love Actually  before deleting all of the Christmas specials and Christmas movies from our DVR.  

Before signing off, I will leave you all with one of my favorite Christmas songs.  It tells the greatest story ever told in a beautiful way.  Fills me up with love :)  Goodnight and God Bless.



Friday, December 23, 2011

We'll be okay

Everyone is worried about Lou and I (and of course, Ty) after yesterday's post.  I just wanted to send a quick update to let you all know that we are doing just fine.  In fact, Ty had a better day today and that is a relief.  He is still weak, but he woke up stronger than yesterday so we hope for a slow and steady return to normal.  And, of course, a clean MRI next week. 

Lou and I remind each other throughout the day that the CT scan showed no evidence of disease.  We remind each other that Christmas is in two days and we are so happy to have Ty with us.  We remind each other that no matter what happens, we have a plan and we will never lose hope.  We are okay and we are happy.  I promise :)

Tonight I am really excited about Christmas.  I have a pile of toys all wrapped up and tucked away and I realized that we have just a couple of days until we will let Gavin and Ty loose under the Christmas tree.  It is going to be so magical. 

Thursday, December 22, 2011

Come on Christmas Miracle!

Come on, Christmas Miracle!!! Please don't lose momentum now!!! While I know what an amazing and joyous miracle it is to have Ty here with us this Christmas (and that alone is truly a miracle), I am asking everyone to please keep Ty in your prayers and ask God to allow his healing miracle to continue for many, many, many more Christmases to come. May his cancer never, ever, ever, ever come back.

We went to the hospital today for Ty's bi-weekly check-up and infusion. We woke up early so we could participate in a Christmas party that was being held on the pediatric floor. When I took Ty to the bathroom before getting in the car, he was unable to hold himself up on his own two feet. This is a drastic change from yesterday, which is always alarming. I laid him down to change his pants and I saw him reaching over with his right hand to pull up his left arm, which was otherwise limp. He gave me a look like, "huh, that's weird" and I gave a calm but urgent call out to Lou to come and see what was going on. Ty was so incredibly weak on his left side this morning that the two of us could barely focus the entire rush-hour ride into the city. It doesn't make sense. "What could this possibly be other than cancer?" is the only natural thought that was running through our heads over and over and over again.

His doctor simply couldn't explain it. Once again, Ty has stumped everyone. Of course, they ordered an immediate CT scan to check for any tumor activity. Lou and I were sick all morning in anticipation of the scan. Time was standing still. We put on our best smiles for Ty, and for the sake of Christmas and all of the hard work everyone was putting into the party, but I made eye contact with countless people throughout the day who were wondering why my eyes kept filling up with tears. I am still not over it.  Ty, on the other hand, seems to have no idea.  He was happy as could be today!!  He had so much fun and was smiling from ear to ear all day.  He has such an incredible spirit, I am so in love with that little boy. 

The good news is, the scan didn't show any tumor. Partial exhale, thank you, God.  There is one questionable area on the brainstem, but we need an MRI in order to draw any conclusions whatsoever about what's going on there. So, instead of January 4th, Ty's next MRI has been bumped up to Thursday, December 29th. Christmas and all of the fun we have planned over the next week should help Lou and I hold it together until then. Not knowing for sure is better than hearing those words we are most fearful of. I hate the uncertainty, but I hate bad news much, much, more. I am okay with this for now and I am trying to remain confident that the scan on Thursday will remain clean.

I am so tired of playing this guessing game. I don't want to try and laugh it off while saying things like, "Ty has broken the rules again, and no one knows what all of this means! His doctors just can't keep up with him <insert smiley face>." In reality, there's nothing amusing about this. There is no smiley face to insert. Watching every symptom... tracking his every movement with scrutiny... banging my head against a wall hoping for an epiphany that explains it all (other than a relapse)... feeling so sorry for him when I see him lose some of the independence he's been working so hard for because he can't get around again.... it's literally eating me up inside. Or, rather, it's more like I'm suffering from a very slow and deadly bleed that keeps me teetering on the brink of consciousness. I am losing it a little over here.

When we were waiting for our CT appointment, we had about 1/2 hour to kill. I told Lou I wanted to take Ty across the street to Saint Catherine's church. I'm so glad we did. It was surprisingly warm outside and while I was sitting in the pew I saw the priest who helped me back in May when I stammered through the church doors in hysterics. He recognized us immediately and was so happy to see Ty looking so well. I told Father Jordan about the upcoming CT and he blessed Ty and told me "he's gonna be okay." I believe him. I do, with all of my heart. I know you all believe, too. Thank you for that.

Goodnight, everyone.  Hoping to report that Ty is stronger tomorrow, or at least the same. 
XOXOXOXOXOXO,


Monday, December 19, 2011

Anything but cancer

Cancer is not welcome here.  It can never, ever, ever, ever, ever come back.  As I mentioned yesterday, Ty has been showing some physical symptoms that we haven't seen in a long time.  Please, God, don't let it be cancer again.  Anything but cancer.

I spoke to Ty's doctor first thing this morning and he believes the increased weakness we are seeing on Ty's left side is not related to new cancer growth - but that doesn't rule out the possibility.  He feels that Ty is suffering from spasticity, which is becoming more visible now only because Ty is getting stronger.  As Ty's muscles begin to regain mass and tone, the neurological weakness on his left side is becoming more noticeable.  This spasticity is likely permanent, but also treatable with continued therapy.  When I spoke to his physical therapist later today, she agreed that it would explain what she is seeing, and then she reassured me that walking again is still a highly attainable goal for Ty.  And "he will get there, he will walk on his own again," she said. 

Unlike an older person who suffers a stroke, when spasticity like this appears on someone so young it is hard to say where he will net out because there is still so much growing and brain development taking place.  In fact, my doctor warned me that there will likely be additional neurological issues that present themselves as Ty gets older.  I am sad and mad!  But I'm also okay with that.  Just the fact that we use the words "getting older" in conversations about Ty makes me rejoice in the miraculous fact that he is here.  I have no doubt that Ty will continue to roll with the punches and amaze us with his strength.


Ty's doctor referenced two reasons why he felt confident that these issues aren't related to new tumor activity.  First, because if there was enough tumor burden on Ty's brainstem to be causing weakness, he felt we would be seeing other symptoms at the same time (headache, vomiting, heartrate fluctuation or vision issues).  Second, because I told him that Ty's hand was cramped closed all day, but semi-open and loose when he was sleeping at night.  He explained to me how that would indicate spasticity because spasticity occurs when the brain is consciously trying to move certain muscles, but the muscles don't/can't respond properly.  When I crawled into bed next to Ty tonight, I saw that his left hand was shut tight.  Can you even imagine how scared that made me?  I tried to open it and it snapped back closed.  Again, I forced his fingers around my hand and I just prayed.  I found myself repeating the phrase... "please don't let this be cancer, please don't let this be cancer, please don't let this be cancer," over and over and over for who knows how long.  Eventually I let go of his hand and it fell limp, fingers open, no cramping whatsoever.  A sign?  I certainly think so. 

Thank you all for your continued prayers and support.  I'm going to try this sleeping thing again now.   

Restless night

I was exhausted last night so I went to bed early, without even picking up the house.  Of course, that backfired on me because I've been up since two in the morning tossing and turning.  Now I'm sitting in my living room surrounded by the mess that awaits me and wishing I was sleeping soundly. 

I am worried, but not terribly.  Ty's left side seems weaker than usual.  His hand was cramped closed the majority of the day and he can't lift his arm as high as usual.  I've been told he is going to have good days and bad days so I just keep reminding myself that it was a bad day as far as his physical progress goes.  Praying that tomorrow will bring improvement.  I was obsessing over him while he was sleeping and happy to see that when he is relaxed his fingers in his left hand are loosely open (there were times when his tumor was acting up that his hand would remain severely cramped closed at all times).

He is such a sport about it.  It doesn't even seem to bother him when something like this happens.  He just finds ways to accommodate and I am always so impressed by that.  For example, when he was playing with his toys I noticed him lifting his left arm with his right hand to move things along and he did so with a smile.  If he's not worried, it helps me to worry a bit less.  Don't get me wrong... I will be calling his doctor in about five hours and I've already sent him an email for reassurance. 

We have been so busy preparing for Christmas, I wasn't able to share any updates for days!  Below is one of the Christmas photos we took of the boys.  I just love the way Gavin is holding Ty's hand.  These two melt my heart. 


I went out to dinner in the city with a friend on Saturday night and had a great time.  It was so nice to catch up and know that Ty is perfectly fine at home with his Nana for a few hours.  How my life is finally turning around!  It's wonderful.  I am happy to step out from the crazytown that I live in most of the time and make pretend that I remember what it is like to be normal.   

I am really looking forward to Christmas.  It is going to be so magical this year.  Even though I should be panicking because I have so much left to do, I could care less.  Our tree is gorgeous and I just love this time of year.  Everything will get done and I imagine this will be the best Christmas we've ever had.

At dinner I learned that a mutual acquaintance lost her daughter to cancer a few months ago.  My friends had kindly conspired to keep this information from me (I was aware that the little girl was in treatment) but it came up in conversation last night.  I ended up crying during my drive home, for her and for another little girl I know of who lost her life to neuroblastoma this week.  There simply isn't enough being done to support new initiatives in pediatric cancer and it's disgusting.  It makes me sick that there haven't been any major advances in thirty years!  That children are following adult treatment protocols that are highly toxic and met with much less success.  Lou and I will never stop doing what we can to help change this.  In fact, we are talking with our neurosurgeon on Wednesday to discuss ways in which we can leverage social media and under served research to gain momentum for a few niche pediatric brain tumors (i.e. rhabdoid tumors).  Some day things will be different. 

Speaking of which... have you noticed all of the green posters?  All of the amazing visibility Saint Jude's has this Christmas season?  Every time I see a poster I smile from ear to ear. A photo of a beautiful baldy that reads "help to save her life".  Finally.  I have always been discouraged by how little is out there from a marketing perspective to support pediatric cancer research.  I never understood it.  These children are our future and the statistics are crushing!  Pink is everywhere for breast cancer.  When will there be similar marketing campaigns to supports the children?  I think it will happen, and soon.  Pottery barn was selling beautiful candles where all proceeds go to Saint Jude's and they were sold out before I could even get my hands on them!  Well, that's not true, I got a hold of a store in Pittsburgh that had a handful left and I cleaned them out - had them shipped out to me.  If you are asked if you would like to make a donation to Saint Jude's during your next checkout at the supermarket, CVS, Target, etc.... please do so.  Please.  I know things are so difficult right now, but as Mary Pallota says... you can always give a half a sandwich.  Mary and The Guardian Brain Foundation has been there for us from day one and we simply adore her :)  She has such powerful love for the cause and a perfect perspective. 

Click here to see how one of my favs, Jennifer Aniston, is involved.  The picture below isn't an actual link to make a donation, but I wanted to share an image of the types of posters to keep an eye out for this year.  They are everywhere and I couldn't be happier about it. 


Just one last update before I go.  This afternoon I was researching AT/RT long term survivors (5 years or more) in order to see what their treatment protocols were and how long they continued with oral chemotherapy.  I only found three so far... so unfair... but their stories only strengthen my hope.  Ty will be among them, I just know it.  In fact, there was one girl who shares his miraculous story almost exactly.  She had MRSA meningitis, she had multiple shunt complications, she had metastases and she had lepto-meningial disease that was cured with radiation.  Unbelievable.  She is five years cancer free.  That is just amazing.  I hope I can find her parents to share stories and get some advice. 

I am going to try and catch a few more hours of sleep before the household is buzzing again.  Goodnight everyone, and thank you for your continued prayers and support. 

Wednesday, December 14, 2011

milk and honey

Today has been an extra mushy day.  I have given Ty about 200 hugs and 1,000 kisses already, and the night is still young.  I'm smothering Gavin with mush, too, but I have to chase him down and tackle him for it.  He likes to put up a fight just for fun.  Ty, on the other hand, has always been a love.  He was born to cuddle and I swear to you his skin tastes like milk and honey.  Strawberries and cream.  Marshmallow fluff.  Now do you see why I can't get enough? 

I got word recently that Ty's next MRI will be on Wednesday, January 4th.  When I looked at the calendar my jaw dropped when I realized that is just three weeks from today!  I'm good with this.  Three weeks is enough time between now and Christmas to allow me to enjoy the holidays without having too much anxiety over it... and it is close enough to New Year's that if I am starting to break down I have a worldwide excuse to let loose and blow off some steam on New Year's Eve before I begin picking my cuticles into a bloody mess and involuntarily tightening my shoulders until they scream for mercy. 

Ty is doing well.  The Etoposide isn't dragging him down too much - but he fights me TOOTH AND NAIL twice a day when I need him to swallow his Accutane (random, I know, but the high volume of Vitamin A/Retinol has been found to seek out and destroy new cell mutations - it's experimental but also proven to have some success). 

Accutane is an extremely goopy, sticky oil that is only available in a capsule because it won't mix with liquid.  Each dose for Ty is also such a small amount, that every bit of it it sticks to any type of syringe (which means I can't use Ty's belly tube because it sticks to the tubing and won't even wash off).  So, what I started doing is carving a hole in Ty's favorite flavored fruit snacks, poking a hole in the medicine capsule and squeezing the oil into the hole.  It worked well the last cycle (2 months ago) but this time he is over fruit snacks and ONLY eats pretzels.  I mean, that's it.  And... they have to be square shaped.  The Rold Gold "Snaps" to be exact.  Next week he will probably switch over to only yogurt drinks or string cheese, then only blue lollipops for a week and so on, but that's just to give you an idea of just how incredibly off his eating is.  Damn chemo.  It is a terrible toxin and I just can't wait until we can stop doing this -- or can I?  I am terrified to stop treatment just as much as I am dying inside every time I give it to him. 

My point is that he cries and fights and screams when I approach him with what we call his "vitamins" (technically, we aren't lying :)  The only plus side to the fight is that he really gets a good workout kicking and screaming and carrying on.  His left side is still so weak, but I do see slow and steady overall improvement.  You all know that i expected Ty to be walking by now, but the new reality is that we are looking at several months.  Maybe even another year before he is independently stable again.  But he tries, he improves every week, and he is so happy about any little progress that it makes the rest of us realize how his perspective on life is better than anyone else we know. 

To give you an idea of the progress he IS making... yesterday, in preschool, Ty sat at the table and he strung beads onto a pipe cleaner.  This was the first time I have ever seen him do this in his entire life.  You may remember he went through a couple of phases where he loved to make beaded jewelry when he was confined to his bed... but I always had to put the string through the hole for him.  He picked the bead, I helped him string it, then he would pick the next bead.  Yesterday, he did it 100% on his own.  It was a triumph and he has no idea. I was so happy for him.

Here are a couple of funny pictures I took on our way out today.  Ty is loving his hat, and Gavin looks like a gangsta. 




I love these guys.  Goodnight everyone, and thank you for all of your continued prayers and support.  XOXOX - The Campbell Family

Sunday, December 11, 2011

Remembering

Today is a national day of remembrance.  There is a worldwide candle lighting on the second Sunday of December every year to remember children who have died at any age of any cause.  Tonight, Lou, Ty, Gavin and I went to the NYU hospital to light a candle for Remy.  My dear baby cousin who lived for 95 days to teach us all how important it is not to take life and beauty for granted.  As Pete and Mary would say... to Relish Every Moment You have. 

So many friends were there to support Pete and Mary today.  I am so amazed at how wonderful people are.  I was especially happy to see an old classmate and soccer teammate, Kerrie.  She lost her sister ten years ago and she came with her parents and her husband to light a candle in honor of Remy and her sister.  Love was all around them and everyone. 

To quote from my amazing cousin Pete (www.ourlittleremy.com)

We are lesser because:
We have a permanent hole in our souls that will never be replaced.
We are greater because:
We became parents.
We are greater because:
We have grown closer together as husband and wife than I could have ever imagined.
We are greater because:
We learned what real love really is.
We are greater because:
We learned the true meaning of life.


I borrowed this photo from Mary's sister.  I lit a candle for Remy at NYU tonight, and right now I also have candles lit for Tanner Eichele, Ronan Sean Thompson and Angela Anna Leva (Fran, I didn't know, I'm so sorry). Below is a quote that I borrowed from Tanner's mom.

"If you know someone who has lost a child, and you're afraid to mention them because you think you might make them sad by reminding them that they passed away--you're not reminding them. They didn't forget they passed away. What you're reminding them of is that you remembered that they lived, and that, is a great gift." ~Elizabeth Edwards

 
This weekend I took Gavin with me to visit a WONDERFUL family who have done so much for us over the past year.  While I was there they asked me how old Gavin was.  He is two years and seven months but I automatically answered, "two and ten months."  I know I did this on accident because Ty was diagnosed at two and ten months.  I have been so preoccupied about that lately because Gavin is approaching that age.  I am sick over the idea that a baby so innocent and sweet as my little Gavin would have cancer.  I forget that Ty was so young when all of this started.  And even so much smaller (Gavin is WAAAY bigger than Ty ever was).  Why isn't there a cure yet?  It's just sick.

I should have gone to bed a couple of hours ago but I can't.  I'm in mourning tonight and it's a good thing.  Otherwise my house is quiet.  Ty has been absolutely amazing these days.  Even despite the recent switch to Etoposide in place of the Temodar he has been on.  In fact, the only side effect I notice right now is that he is sleeping very late - he wakes up after 9AM some days!! (can't complain there!).  The other afternoon I watched him, secretly, as he played by himself for almost 30 minutes.  He scoots across the floor on his butt (not walking yet), opens his toybox, and talks to his toys.  Just like I remember doing in my earliest childhood memories.  Oh..., how life is changing for me.  All is good.  So... very... good.   And I have each and every one of you to thank for that.  XOXO!  Good night. 
 

Wednesday, December 7, 2011

Christmas memories

We decorated our Christmas tree tonight.  It was so nice!  I wish I was able to get some better photos - these are terrible - but better than nothing.  Ty and Gavin hanging their first ornaments.  Ty chose a spiderman ornament (although I think he is growing out of his obsession over superheroes just a little) and I gave Gavin an extra sparkley one that he was eyeing.  Of course, it was broken just seconds after this picture was broken.  I saw it coming which is why it's so blurry; I was jumping up to grab it right as the photo snapped.  Ha!



I swear, almost half of the things I unpacked were gifts that we received last year, during our most difficult times.  There were so many beautiful things that I was so happy to unwrap under these much happier circumstances.  To all of you who were here for us last year - friends and strangers - I know I was unable to properly thank so many of you and I just want you all to know how grateful we are. 

I came across a card in one of the boxes that was written by one of my closest friends.  It was a simple, beautifully written note that was sent to console me.  I cried like crazy after reading that.  I don't know if they were happy tears or sad tears, I honestly don't, I just know that I am relieved and sometimes it takes reminders like that to help me exhale and relieve myself of some grief that was building when I didn't even know it. 

Last year, everything at Christmas was a "last".   I can't even begin to put into words what that feels like.  Ornaments that Ty picked out were purchased so they would be a reminder of the child we were going to lose.  I took endless videos.  I saved everything he drew on. We met with our at-home hospice nurse and I stared at her with confusion.  I thought, "What will she be doing when he is dying?  Will she be rubbing my back, whispering kind words?  I don't want her to!  I don't want her here!!  I wish she would get the hell out of here!!!"  There was a piece of me that hated that nurse.  I know that sounds so unfair and unrealistic, but I can't control the fact that I felt that way.  It was what she represented, I guess.

This year, I am hanging angels everywhere because that's where I feel them... they are everywhere.  I find more magic in the word "believe" because it has new meaning for me.  My eyes are open.  My son has beaten all odds and it is a miracle.  The tumors that existed in his spine last Christmas disappeared and there is no real medical explanation as to why.  The doctors simply don't know (but I do, thank you God).  I don't know what tomorrow will bring, but I am certainly rejoicing over today. 

XOXO

Monday, December 5, 2011

Those beautiful eyelashes

Ty has the most beautiful eyelashes.  It is something that people have commented on since he was two years old.  So long and pretty, I wish they were mine!  Well, they are mine, in a weird way, but I mean mine as in "on my face."  They are just stunning.  I am so happy they are still the same long eyelashes that he had before chemo took them away, before steroids made them freakishly long and curly, before chemo took them away again.  Today, they are just normal.  I was staring at them today and I realized that he has his real, true eyelashes back - and that they are so beautiful.  His hair is softer again, too.  He is looking really good.  Really healthy.

So, I am happy.  I am excited for Christmas.  Ty is amazing.  Gavin is amazing.  I am the luckiest person alive.  The only thing that's concerning is how tiny Ty is for his age, but who cares.  As long as he is cancer-free for the rest of his life, we can always make up for all of this growing that he is missing out on due to treatment. 

All of the kids Ty has known since he was born tower over him.  Including Gavin, who is almost 2 inches taller.  But I talked to his doctors about it and this is simply to be expected.  Kids don't grow on treatment or after radiation, and we will just meet with an endocrinologist when he is six or seven years old to discuss options.  It doesn't bother me right now.  I am just so happy he is here and he is not in pain.  I just can't wait for the day that he can get off the chemo.  That we can remove his mediport.  That he no longer needs to have GIANT FRIGGIN NEEDLES jammed into his chest every week or so.  It's just so beyond what any four year old should have to endure.  That's why he's SuperTy.  Preschool tomorrow.  Infusion on Wednesday.  Love you all, and good night. 

PS - I am LOVING the holiday season.  Is it always this magical?  I can't remember because I have been living in a fog.  The clouds are clearing and it is indeed the most... wonderful time... of the year!




Friday, December 2, 2011

Climbing down from the bridge

Thank you, Catherine.  You are right, I need to pull away from the caring bridge before I want to jump off again :)  I had a hard time sleeping this week, which was probably evident in my last post.  I've been consumed with thoughts of some kids who I've known who lost their lives to cancer.  I stare at Ty sleeping and I feel so incredibly lucky, and so guilty, and so scared of the possible reality that his cancer may come back.  I don't believe it will, I promise.  I do believe he is cured forever, and his amazing progress only helps me to know this is true; but it's only natural for my mind to race like it does.  In fact, the thoughts and visions I have of all the other children is spiritual for me.  As if I am somehow connected to these innocent beauties and I am lucky to know them.

Yesterday someone posted a long comment about her own struggles with infertility, and I appreciate how she shared her innermost feelings, I understand and can relate.  There is a post traumatic stress syndrome that is associated with such painful life experiences. I am healing, but I won't ever fully recover.  So thank you, for staying with me through all the ups and downs and always praying for my family.  I don't know what I would do without all of my friends and family, old and new, who have shared this journey with us.

Ty is doing SO WELL lately, I sometimes second guess whether or not I remembered to give him his daily doses of chemo.  This entire week he has been especially strong.  His bloodwork is good this week, and he is scheduled for his next infusion on Wednesday.  At that time, we will also switch his current chemo (Temodar) to start his next cycle of Etoposide.

He is becoming more and more physically active, and he is just increasingly HAPPY!  Less whining, less resistance, less anxiety and fewer questions about his next "pointy" (appointment).  He is sleeping very well with little or no medicine.  And, a lot of his hair on the back of his head started sprouting this week.  I thought it would never return because it has been so long since his last radiation treatment (4 months) but it finally looks promising.  I think the areas where there is permanent damage to the hair follicles will be relatively covered by his other hair if it continues to grow in.  I am so happy for him!  He doesn't care, but someday he might. 


Ty went to preschool Tuesday and Thursday and he was so happy to be back after all this time.  In fact, he didn't want to leave!  He cried so much on the way home Tuesday I had to pull the car over.  He is participating more in class, and he is making friends.  The girls, especially, are so cute.  They have this natural instinct to nurture, even at three years old.  When I get up to help Ty walk, they run over to hold his hands, too.  They want to help.  They want to sit next to him and help him reach for the paint or the crayons.  It is just so stinkin' cute. 

I feel with all my heart that Ty is going to grow up to be an amazing man someday.  He is so special, I am already so proud of the little boy he has become.  May he continue to make me beam with pride, so much so that I annoy my family and friends with my bragging :)  He will do great things.  I believe he is still here for reasons bigger than I am meant to understand.