Showing posts from December, 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.  Unfor

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 tra


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 f

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. 

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 t

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 "

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

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 c


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 R elish E very M oment Y ou 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 ( We are lesser because: We have a permanent hole in our souls that will never be replaced. We are greater because: We bec

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

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 o

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 t