Showing posts from November, 2011

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!

Busy weekend

We had such a wonderful weekend.  On Friday, Aunt Theresa came over with Ty's cousins James and Ryan.  The way all the boys played together made me wish so much that Ty and Gavin had a bunch of older siblings to keep them entertained and laughing all day long.  I hardly had to do anything all day!  It was amazing!  And, Ty was more motivated to scoot across the floor and be active with his cousins which was great for his physical therapy.  He even wanted to take a bath, a rarity, because his cousins were taking one with Gavin.  He hopped in and really enjoyed it.  My house was totally destroyed, but it was also filled with roaring laughter.  It was great.  My sister slept over that night and after we put the kids down we stayed up late with a bottle of wine.  We talked about family and friends and so many other silly things... but surprisingly, we didn't talk about cancer.  At least, not too much.  I am at the beginning of some very big changes in my life, and it is wonderful

Miracle MRI recap

Tuesday was one of the most stressful days of my life.  It already seems like it was sooo long ago.  I have been walking on clouds ever since and life just doesn't feel real yet!  Following a sleepless night on Monday (of course) Lou and I hit the road at 5:30 in the morning to arrive in time for Ty's 7:30 MRI appointment.  We arrived five minutes late, but because Ty's mediport wasn't accessed yet (which caused delays) they had to push his appointment back to 11AM.  Can you imagine having to wait another three and a half hours on top of the endless waiting that preceded?  I was falling apart.  On top of the obvious anxiety, Ty was NPO so I wasn't going to eat or drink anything in front of him all morning.  I went without my morning coffee and I was dying for it.  Oddly enough, I crave caffeine the most when I feel the highest levels of stress.  Ty was under anesthesia for more than two hours, so Lou and I went to our usual place down the block to get something

Thanks be to God

As many of you already know from Ty's facebook announcement, his MRI was clean!!!!!!!!  There was no evidence of disease, which means Ty remains cancer free.  May he remain cancer free forever. This is truly a miracle.  Ty was diagnosed with terminal cancer less than a year ago, and today he has no evidence of disease.  Thanks be to God, to his doctors and nurses, and to all of you who are praying for him and sending words of encouragement.  Please continue to do so.  He is still in treatment and he is having a tough time with the chemo, but we will never stop fighting.  Here he is at the marathon just two days ago.  He looks great, doesn't he? I have so much to share, but I am in too much shock to organize my thoughts.  I was terrified today.  Ty was showing so many signs that have meant "tumor" in the past.  The drooling, the vomiting, the slurred speech (in hindsight, it was probably the chemo taking a toll on his tiny body).  I still can't get a hold of
Just opened this Fortune Cookie.  How perfect.


26.2 miles.  That is a long way to run.  Yesterday was very emotional, very inspiring, and very exhausting.  Lou, I meant it when I said that I have never been more proud of anyone in my life.  Aunt Debi, you are amazing.  We love you. Ty and I went out for breakfast yesterday morning before we set off to cheer on Fred's Team outside of the hospital  (as usual, Ty wan't interested and I ended up eating breakfast for two).  There are 775 men and women running to raise funds for Memorial Sloan Kettering cancer research.  We saw someone running for Fred's Team pass by every minute!  It was awesome.  Thank you, thank you, thank you.  We shared the sidewalk with so many of the nurses who care for Ty, and some of the boys and girls staying in the hospital were allowed to come down to cheer on Fred's Team, too!  One runner stopped to give his medal to a little one in a wheelchair.  He said, "I'm running for you" and he didn't even know this child.  I was wi

Marathon tomorrow!

Ty and I traveled down to Manhattan to be with Lou and Debi tonight as they prepare for the Marathon.  The midtown hotel is buzzing with anticipation for tomorrow's race.  I am so happy to be part of all of this excitement. Ty had a terrific day today.  No vomiting whatsoever and he had a decent appetite so I feel a bit more at ease tonight.  I don't know how any of us are going to sleep a wink regardless, but still - at least I can exhale just a bit.  We took Ty to Dylan's candy shop this evening and then to one of my favorite sushi restaurants on the Upper East Side.  He was such a good boy the entire time!  I think he likes the city very much when he is here for reasons other than going to the hospital.  He especially enjoyed hailing the cabs.  He was adorable.  I'm SO glad that the G-shots kicked in and he is no longer neutropenic.  Otherwise none of this would have been possible.  Tomorrow we will be waiting for Lou and Debi in front of Memorial Sloan Ketteri

Panic Attack

There is blood all over my beautiful new sheets.  I was picking my cuticles in a nervous state of stress last night and five of my fingers are raw and bleeding.  It hurts, but I still continue to do it over and over again.  Until cancer entered my life, I had never known what a full-blown panic attack feels like.  I experienced high stress - mostly work related - where I swear I could feel wiry gray hairs sprouting from my scalp.  But this level of panic and anxiety was foreign to me.  I wish it still was.  Lou had the day off yesterday so he got up extra early with Ty and I slept until Gavin woke up.  When I came downstairs, I noticed Ty was in different pajamas.  I asked him, "Hey, what happened to your Sponge Bob PJ's?"   He didn't answer.  Lou game me an exaggerated frown.  "What?  What happened?"  Lou made a gesture that showed me Ty threw up.  Since I am incapable of subtlety under these circumstances, I immediately started to panic and shouted a sle

Three things

I have three things that I want to report on tonight before I get back to the mounds of dishes and piles of garbage leftover after cleaning out my refrigerator.  There is a plus side to the power outage... I had some very old c*ap in my fridge and freezer that must have been buried in there since the ice ages.  It was actually liberating to throw away the freezer-burned, family pack of pork chops that was dated 2009 (how it even made it here in my move from Long Beach is beyond me).   Clearly, I'm not exactly big on cooking ;)  FIRST - I have several "Happy Birthday shout-outs .  Colleen, what can I say?  You make me laugh constantly.  You lift my spirits.  You have been my friend since Kindergarten and even with 3,000 miles between us I feel as close as ever.  I love you.  Hope you had a happy birthday.  Catherine is friend who I've known for 12+ years, and we've only gotten closer as time goes by.  She is a wonderful cook and she used to have me over for dinner o

Healing rainbows for all of us.

Ty's bloodwork showed that his counts were still dropping as of Friday.  We cut his daily chemo dose by another 25% (this is the second week in a row we lowered his chemo) and he was so happy I thought he must be bouncing back.  Unfortunately, his bloodwork today showed his white blood cell count to be dangerously low.  We are down to an ANC of 0.2 from 0.6 (for those who are familiar with the term) and we are going to have to stop the chemotherapy altogether for a while.  I will also have to begin giving Ty his "G" shot every day starting tomorrow.  This was definitely unexpected, but for me it only verifies that we made the right choice by beginning this metronomic chemotherapy regimen instead of traditional chemo because Ty's bone marrow just isn't strong enough for all of these toxins.  His spirits are so great, you would never know that he is neutropenic.  He has always been that way.  I remember the first time I brought him to the emergency room for a feve