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Showing posts from October, 2011

NBC Segment!

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NBC New York ran a story about Lou and Fred's Team on the evening news yesterday!  It will also be running throughout this weekend (watch it here http://www.nbcnewyork.com/video/#!/news/local/One-Fathers-Special-Reason-to-Run/132827623 ).  There was some adorable footage of SuperTy at the doctor's office as well :)  Lou is one of the top ten fundraisers for Fred's Team among more than 700 runners on the team - and we hope over the next few days he can be among the top 5!  We are so proud of him.  As you know, this is a cause that is so near and dear to us because Fred's Team funds go directly to research at Memorial Sloan Kettering Cancer Center (where Ty is being treated).  This research saves lives.  Thank you so much for supporting Lou in this accomplishment of a lifetime :)  CLICK HERE to make a donation on behalf of Lou.

F#@% the other shoe!

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My friends have been worried about me. I guess my posts lately have been a little weary and I sound fatigued.  These peaks and valleys are to be expected after all we've been through.  It can be hard to avoid living in limbo and waiting for the other shoe to drop.  Well, to quote my friend Linda, "F--- the other shoe!"  She's right!  There will be no other shoe dropping.  I am totally inspired to turn my attitude around.  Even at four in the morning I feel really good despite the fact that it's often these middle of the night ramblings that tend to bring out my worst fears.  Of course, the fact that I am wide awake at four in the morning is another issue that I will have to conquer at some point, but for now I can be friends with my insomnia.  I should try to use this time to accomplish some long overdue tasks, or just some mindless online shopping to clear my head ;)  Ty had such a great day today, I am looking forward to tomorrow. In fact, I just saw an e

Pajama Day

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I had a lot of fun with Ty and Gavin today.  Gavin was a little off the wall, but he makes up laugh.  Ty is feeling so much better with the exception of a nagging cough.  I give him a prophylactic antibiotic in order to avoid the development of pneumonia (should he become congested in his lungs), but I think this will subside in a few more days.  He is tired from the new meds, but in such great spirits.  I am so happy that he is happy and having fun, regardless.  You should see him walking!  I will have to post a video soon, he barely needs support anymore.  He is doing great!!  Today we started supporting him with only one arm to help his balance and he is otherwise doing so much of it on his own.  I am beaming all over whenever he goes for a walk around the house.  He gets around so much by scooting across the floor, too, that I actually lost him twice in the last week.  Can you imagine how great it felt to have to peek around the corner in the kitchen to find out where he was?  It w

Brain Tumors Suck

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I don't consider myself weak, nor am I all that strong... but I do still cry often despite how amazing Ty has been doing.  I am sure that I will be so much better off, mentally, once Ty's scan on November 8th shows no evidence of disease.  Until then, I will continue to worry about his drooling and his eyes.  His eyes are just "off" ever so slightly.  I'm not the only one who mentioned it... Lou has been worried about his eyes, too.  His doctor says it can be from overall weakness as a result of the current chemo, and I have to believe he is right.  The cyclophosphamide he is getting this month has taken a worse toll on him than the previous meds - his counts are low, his hair is thinning and he has mouth sores - but Ty seriously never complains.  He is much more tired and cranky than his usual self, but other than that he laughs his way through the day.   Today I was holding him while we looked through some of his toys in storage downstairs.  He saw a big ba

The brightest star in the sky

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On the night before Ty went to the hospital for his very first surgery, Lou and I took him down to the beach at dusk.  The weather was a perfect, mid-August night with a beautiful breeze, an amazing sunset, and calm, rhythmic waves.  It was one of the most depressing nights of my life.  I've probably written about it before, but it has been on my mind alot lately so it bears repeating.  Ty was already showing signs of the tumor.  His speech was slurred, he was drooling, and he suffered from headpain.  All three of us were very quiet and there was a numb sadness around us.  Ty seemed to be particularly heavy.  It was as if he knew why we were on the beach that night, trying to enjoy one more beautiful night with our beautiful boy before officially entering the horrific world of life after cancer. When the sun set, we looked up in the sky and I asked Ty to pick out a star that we would designate "Ty's Star".  Of course, he chose the north star - the brightest star in

Fun with Spot

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It was Ty's turn to take home the "class pet" this week.  We had a lot of fun with Spot over the past few days.  As long as Ty wakes up feeling well, we will be returning him tomorrow.  Here is the cute note that we included in the class journal... "I really enjoyed taking home the class pet over the weekend.   We had some beautiful weather so Spot joined us on a nature hike.   We hunted for bears the entire time and we even came across a huge cave that me and my friends think used to be home to some dragons! We also took Spot to the playground with us!  He was scared to try the slide, so he stayed on the bench like me.  After a while, though, we gave it a try and it was really fun!  Mommy held our hands so we could climb all the way up to the top, but we slid down all by ourselves!  All  of that exercise made me really tired, too, so we took a nice nap together during the ride home." Ty woke up a little bit congested today.  I sk

Another New Chemo Cycle Begins

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Ty and Gavin went to see Max and Ruby at the Mid-Hudson Civic Center this weekend.  For those of you who don't have small children, Max and Ruby is a cartoon on Nick Jr. that is very popular among preschoolers.  It is Ty's absolute favorite, and we watch it over and over and over. I wasn't able to go, but Lou was there and he told me that it may have been the most excited he has EVER seen Ty - maybe even more than when he saw the Yankees; of course, that's just because he's so young and he doesn't know any better ;)  In the meantime, I had the best time on Long Island with my favorite girls.  I was there for my cousin's baby shower and stayed late to hang out with some of my oldest, bestest friends.  I can't tell you how liberating it was to be out all by myself.  It was the best thing I've done for myself since Ty got sick.  My friends are my best therapists :) Thanks to the amazing PR folks at Max and Ruby (they saw his story in the Poughkeepsie

Fred's Team - NYC Marathon

Many of you may already know that Lou will be running his first marathon in honor of Ty.  The training has been rigorous, but Ty's strength inspires Lou to succeed.  I am so proud of him!  He is running as part of Fred's Team to raise money for cancer research. Named for Fred Lebow, legendary runner and founder of the NYC Marathon, Fred was diagnosed with cancer in 1990. He dedicated his 1992 NYC Marathon to cancer research for Memorial Sloan Kettering Cancer Center (MSKCC) and raised nearly a million dollars.   Since its inception in 1995, Fred’s Team has raised more than $42 million to fund pioneering research that saves lives and brings hope.   Fred’s Team has been a major source of pediatric cancer research.  Please read Lou's story below.  If you wish to support him, please vist http://mskcc.convio.net/site/TR/FredsTeamEvents/Freds_Team?px=1969708&pg=personal&fr_id=1460   Help me Make a Difference in the Race against Pediatric Cancer My name is Louis Ca

Pumpkin patch

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This morning we went on a school field trip to the pumpkin patch.  Gavin joined us and they were so cute picking out their pumpkins.  Unfortunately, they weren't very willing to smile for the camera, so this is the best I could do... Gavin hunting for the perfect pumpkin... Ty holding up his tiny pumpkin during our hay ride (actually, a little girl in his class picked it just for him and he loves it)... and Gavin with a couple of farm fresh apples.  When we returned home, it was so beautiful outside I decided I should put some spring bulbs in the ground.  Ty actually picked them out.  He asked me to buy tulips and daffodils in the supermarket a few weeks ago and we ended up with several bags full of all different colors.  This is not something I would have opted to do if it wasn't Ty who asked for the flowers :)  I don't really know what I'm doing.  Anyway, he wanted to help me so we went outside and he was such a trooper.  I dug the holes and he threw in

Wishing every day were Groundhog's Day

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Ty is doing great.  We were at the hospital on Friday for a chemo infusion and his bloodwork came back good.  His counts are declining as expected, but still strong enough that he can continue going to preschool and thank goodness because tomorrow he has a field trip to the pumpkin patch that we are all looking forward to.  Gavin is invited, too, and I will try to get some good pictures if they will cooperate.  Here is a recent photo of the two of them sharing a blanket on a chilly Fall morning.  Ty is actually nibbling on a cheese stick - a rare moment :) He is on his last week of this "cycle" so he is more tired than usual and he has no appetite (nothing new there) but otherwise we can't complain.  He lost two pounds over the past week so I am stressed about calories, but with the help of additional supplements we should be able to get him back on track ASAP.  We are having such amazing weather here in New York so we made every effort to get outdoors over the we

Looking ahead

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For some reason, I am drawn to this picture.  I can relate.  It's not the Mary Poppins likeness so much (I am by far the opposite of Mary Poppins) but I like the idea of letting go and trusting a whimsical umbrella.  An umbrella can't really hold me up in a storm of bad news, it can't even protect me from the rain if the storm is bad enough, but still it is comforting to have one in the trunk of my car at all times.  I like this picture because it makes me think of an uplifting sunshower instead of a dreaded downpour.  The best kind of rain is when you can dance in the puddles while the sun is still shining.  The kind that ends in rainbows (and you all know how I feel about rainbows, there isn't a more beautiful or fitting symbol of hope).  Ty continues to do well on his new chemotherapy regimen.  I am starting to get anxious for his next scan, which is scheduled for November 8th. I feel it creeping up on me, breathing down my neck ever so slightly.  I am confident

Thank you for the birthday blessings

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Yesterday was the greatest day.  It was a miraculous day on so many levels, and it was the best birthday ever even though we did nothing much at all.  Lou took off from work, and we just enjoyed our day together as a family.  We went to preschool in the morning and Ty was such a sport about it.  He was really very happy to be there and I think he is getting more used to the idea of going regularly.  I wish I didn't have to accompany him (so that he could be just like all the other kids) but at the same time I am so lucky that I get to observe all of the edible cuteness in that room!  Those preschoolers just melt my heart.  They do the cutest things.  I think the boys in Ty's class don't even notice that he has trouble walking or that I am his Mommy.  They play cars with him and all the regular boy stuff.  The girls are more observant and they watch him a little more closely.  At the same time, they are also more forward.  Yesterday one little girl came right over to sit n

Remembering four years ago

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Ty's fourth birthday is tomorrow.  On this night just four years ago, I had no idea the love I was about to experience.  I mean, how do you explain colors to a person who has never been able to see?   There is a scene in the movie "Mask" where the main character uses a handful of fragrant moss to describe green, something cold to describe blue, cotton balls to describe white, billowy clouds.  I don't think I can come up with a way to describe the pure explosion of love that was bestowed upon me the minute Ty was born, but I imagine anyone with children knows what I mean.  Never before had I felt something so powerful.  Then there was also the gnawing fear that results from being buried under a mountain of new responsibility. Why did God think I would be able to take care of this baby?? I can't even find my glasses or my car keys? Of course, I love Gavin just as much... but he wasn't my first experience at becoming a mom.  I knew what I was going to feel,

A fitting quote to kick off the week

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Birthday Blessings

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Today is my birthday.  When I was pregnant with Ty, my due date was supposed to be October 1st and I remember how much I hoped that he wouldn't be born on that day so I wouldn't have to "share" my big day (and my cake).  He was born on October 4th, and I was pleased.  Today, we celebrated Ty's birthday instead of mine because it is Saturday and it made the most sense to invite all of our family over for a weekend party.  Naturally, I could care less!  I had the best day ever celebrating Ty.  I can't believe he is here with us and getting so strong.  It is a dream come true and the best birthday gift ever.  He can have my birthday every year, there is no better gift than him.  Here he is with his cake, my beautiful, big, almost-four-year-old.  Knowing that I would be crazy with Ty's party this weekend, Lou surprised me on Thursday afternoon and took me to the mall for a looooooooong overdue shopping bonanza.  I got some very necessary shoes and Fall s