Showing posts from 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

Making Magic

This is for you, Colleen.  You never let me stop believing, even when we were given the worst news imagineable.  You made all sorts of magic for me and for Ty, and you still do.  Thank you for your pep talk yesterday.  Some day I will take your advice and let go of the fear, but I just can't do it yet.  I try!  Keep sending me your magic and it will happen :) Most of my sleepless nights revolve around the lingering fear.  In addition to fear, I have a heavy guilt for being happy over the past four months.  At night, I pore over stories on facebook and caring bridge.  I know I promised I wouldn't do this anymore, but I keep doing it!  I guess I am part of a world now that I can't escape and I don't want to escape.  My eyes have been opened to just how many children are suffering with pediatric cancer and I need to know their stories so I can think about them and pray for them.  I don't connect on a personal level because I am simply not strong enough to help, bu

Improved physical strength

Since Ty has been on daily chemo - our new life over the past four months - I simply can't figure out the "rhythm" of it all.  My instincts are always challenged because I don't know what causes Ty's bad days versus his good days.  I can't figure out why one day might be so much better than the next.  Today was a really, really good day.  I hope tomorrow follows suit, but I wouldn't be surprised if it doesn't. Today, Ty had an appetite.  It was wonderful! Considering he ate nothing but rice puffs over the past three days (which are only 25 calories per serving) I was so excited when he announced that he wants an ice cream cone this morning.  By 11:30 I decided it was close enough to lunch time to get ice cream.  But first, I told him, he had to have some lunch.  I never thought he actually would, but I was trying to plant a seed.  We ventured off to The Red Rooster Drive-in (eat your heart out, Nancy) and I was completely shocked when he said he want

JETS Jets Jets Jets

Today, Ty went to his first NFL football game.  The Jets, of course!  What a way to end this incredible weekend.  We have more and more to be grateful for with every passing day.  Today was a day that will live in our memories forever. MetLife (as in, MetLife Stadium!! ) awarded Ty complimentary tickets to the game. Little did we know what incredibly special arrangements the company had made for us. We had the time of our lives. In fact, a great friend and past NYC roommate of mine recently joked that Ty is going to have to "get over himself... we get it... he's great..."  Shep, you are right.  I pray that some day I'll have a hard time explaining to Ty that this is not normal and should not be expected.  :) Here he is, once again, being a super little badass psuedo-celebrity. First, MetLife provided us with passes to stand on the sidelines pre-game.  When we picked up the tickets we didn't actually think our feet would be touching the same turf that t

The dishes can wait

My house has been turned upside-down since Wednesday.  I am not usually comfortable with this.  However, over the past few days I've tried to let time with all three of my boys take precedence over ignorance in the sink.  We played with Play-doh in every room of the house, we finger painted, we did sticker art on the floor (and our faces), we went to the tree farm and "tagged" the tree we will cut down in a week or two, we reintroduced the Elf on the Shelf to Ty and Gavin, we ate late lunches, even later dinners and dessert for breakfast.  Right now I'm surrounded by a sea of toys while Lou and I watch Two and Half Men.  Who do we think we are?  Just watching senseless TV and unwinding with a glass of wine?  This is great!!  These carefree crazies probably won't last past Monday, but I am loving it while it does. It should always be fun like this.  Given all we have been through, I should be living every day to its fullest, but the truth is...  I still get t

Thankful for so much...

Handsome boy on Thanksgiving We are all so thankful that we didn't have to spend this Thanksgiving in the hospital again.  What a relief!  Ty's latest cultures are still negative, too, so we resumed his chemotherapy this morning and he is doing well.  We spent the day at Aunt Debi's house yesterday, and during the ride home I asked Ty once again to tell me what he is thankful for.  He said "presents".  No surprise there.  Then, he really surprised me.  He said, "I'm thankful for my pointies".  Ty calls an "appointment" a "pointy".  "You mean, you are thankful for your appointments?" "Yeah!" he said with excitement. "Your appointments with your doctors and nurses?" "Yeah!  I'm thankful for my pointies, too!" I realized at that moment, that he gets it.  He knows how serious cancer is, and he knows how important his visits with the doctors and nurses are.  Even though he hate

A false positive. WHEW~!

What a crazy week this has been, and it's only Wednesday.  As I mentioned, Ty was running a fever on Monday.  His white blood cell count was elevated, specifically his ANC which is usually more indicative of a bacterial "bug" rather than a virus that might be causing the fever.  Given we were on a plane home from Mexico on Sunday, if there was something in the air it would certainly make sense that Ty would catch it given his poor, broken down immune system. So, of course, I brought him into the city for cultures and an exam on Monday afternoon.  He was given a broad anti-biotic that is geared toward a wide range of bacteria, and we went home.  It was a long day spent in traffic and in between the busy hospital walls.  Ty was a trooper.   The next day (Tuesday), we had to return for his chemo infusion (Avastin - which he gets every two weeks).  He was 100% better.  No fever for over 24 hours, he was feeling great except for a small bout of diarreah.  I was warned the

Uh oh. Fever.

Ty was running a low grade fever this afternoon.  For anyone else, it would have meant Tylenol and maybe the rest of the day in bed.  For a cancer patient in treatment, it means a trip to the hospital.  These are the days I wish we lived closer.  I was so worried about him for a while.  He was just so lethargic which always raises concerns about hydrocephalus or shunt malfunction.  I had tremendous guilt knowing he probably contracted a virus or something on the plane.  I called his team before leaving and asked for permission to give him Tylenol before the ride in because he had been whining and moaning in his sleep non-stop for three hours already.  Although they were reluctant because they wanted to see what he would peak at (at the time he was less than 101), they said it would be okay.  I'm so glad they allowed it, too, because by the time we arrived he was returning to himself again.  His eyes were still glassy and he told the nurse he still felt "yucky" but that

Healing in Mexico

Home sweet home.  It was a short trip, but well worth it.  Lou and I never expected Ty to have as much fun as he did.  At home, he is very, very reluctant to get out of his comfort zone.  He would hardly ever set foot in a pool unless he was forced to, he doesn't like to be outdoors (especially in the sun since his skin is so sensitive), and he doesn't like crowds of people he doesn't know.  We came prepared with DVDs so he could watch them outside on a lounge chair.  Books to keep him occupied.  A few favorite toys.  We thought we have to bend over backwards just to get him to sit outside with us for more than 10 minutes at any given time.  Boy were we wrong!  Instead, he was saying "More swimming! More sandcastles!  More walking!  More FOOD!?!?!"  He had at least one filet mignon every day - my prince.  I cried so many happy tears.  He was like a new kid.  It was another incredible turning point on his road to recovery. Several things happened during our trip

Making memories in Mexico

I have so much to write about, but my laptop has been taken over by Ty and Gavin.  The hotel here in Riviera Maya doesn't have a DVD player, so they use my computer to watch their movies which makes it impossible for me to get online to post an update.  Our vacation has been wonderful.  Better than we could have ever imagined.  I will share a full update tomorrow - hopefully we will have internet during our flight home.  In the meantime, here are some photos so you can see how much fun we've been having.  This trip has been so long overdue. Building sandcastles at the beach Swimming in the kiddie pool (or, according to Gavin, the "kitty" pool) Drinking strawberry smoothies at the kid's bar This is my favorite so far!