As suspected, today was a very long day.   Even longer than we anticipated.   Ty went to bed late last night (after 10PM) but he slept well.   He didn't even wake when I gave him his medication at 11PM and 5AM, which is unusual.     And, we all slept together for a change because we didn't have Ty hooked up to his feeding tube.   It was a nice night. I can't say the same for the morning, though.   At 6AM, I flushed Ty's IV and got ready to leave for the hospital.   It was like a Monsoon outside!   Lou was so concerned about me and Ty going off to Sloan Kettering in such bad weather that he decided to take the day and come with us.   Reflecting on today's events, I don't think I would have been able to survive this day without him.   Thank you DADDY!   You are the best! Ty woke up at 6 when I changed out his meds, and he was in a very bad mood.   He cried so much that it woke up Gavin, and our house was a crazy house for ...

Tomorrow Ty will be back at Sloan Kettering for a PET and CT scan.  It is just 1/2 hour test, but I'm sure we'll be there ALL DAY.  Leave here at 7AM to get into Manhattan by 9:30/10.  He's not allowed to eat or drink anything until the test is over and it isn't scheduled until 1PM so I'm sure I will be absolutely tortured for the first six hours of the day.  It will go something like this... "I want snack, I want snack, I want snack, I want snack, I want snack... Ma-MEEEEEEE.... I want snack, I want snack, I want snack..." and so on.  As long as there are no surprises, it is likely that we will start chemo on Tuesday and our first set of IVs will be given over the course of three days.  Wish us luck!  In fact, speaking of luck, we have a favor to ask.  It comes two-fold from Lou and I.  First, please don't send us any chain emails that warn about the need to pass along the message or be faced with gazillion years of bad...

After a sleepless night (we were watching Dora the Explorer at 3AM) we left the house at 6:45to go to Sloan Kettering for various tests.  Ty was such a trooper, but it wasn't easy.  He is very emotional, and being back at the hospital is so frightening for him.  Most of the tests were painless, but he's so apprehensive about being there and being unsure of what to expect that he was picking at his lips and whining all day.  He had to get a new peripheral IV for the radioactive injection necessary for the kidney function test, which was what upset him the most today.  I told him how Spiderman also has radioactive blood and even though he didn't really get it, he still seemed to be excited about it.  In fact, he decided he wants Spiderman decorations for his birthday -- but still wants a Max and Ruby cake.  That makes for an interesting party theme mix.  Ty has been doing really great with physical therapy to build back his streng...

Sometimes when Ty hugs me around the neck, he squeezes so tight it's like he's trying to absorb me.  Trying to pull me inside.  I do the same to him of course, and I can remember doing it to my mom when I was a kid.  I can actually remember feeling like I just couldn't squeeze her hard enough.  It's an amazing feeling to be on the recieving end of that intense need. Tonight Ty actually went to bed early and without a fight.  He didn't even argue about connecting his "belly tube" which is usually a disaster.  When we were laying down next to each other, he pulled me in nice and close and fell asleep while we were cheek to cheek.  I tried to take in as much of his breath with my own in a beautiful but futile attempt to be as physically connected to him as possible.  His two delicious exhales to my one inhale, I just lavished in it.  Is that weird?  Regardless of his cancer, I think I would have enjoyed moments like that just th...

It kinda breaks my heart to see how grown up he looks, but today we cut off my baby's golden curls to try and prepare for what's ahead and I have to admit.... he's even more handsome than ever :)  After his very extended stay at the hospital, it's true that his hair was totally wild and unwieldy.  He was already in need of a trim before we were unexpectedly admitted, just take a look at him on the way out the door five weeks later.  BUT, it's hard for a mom to cut her baby's hair.  Years ago I couldn't relate to the event in Sons and Lovers when Walter cut his baby's hair while his wife was sleeping and why she felt betrayed, but then I became a mom who is weirdly attached to my own baby boy's hair.  There's just something about wanting to hold onto the beautiful babiness of it all.  He looks so grown up now that we cut it so short!  And, he looks great.  He looks healthy, and strong, and I'm glad he is getti...

Since Ty has been home, he has been sleeping in our bed.  Even though he wasn't a good sleeper before the diagnosis, he still started off in his own bed at bedtime (and often ended up in our bed at some point in the night).  Now, because he is hooked up to a feeding tube every night, he has to be monitored because he is at risk of aspiration.  In addition, he still gets two IV antibiotics throughout the night (one from 10 - 11PM and one from 4-5AM) so we prefer to have him with us.  I'm sharing this information because it has become a big issue for us lately.  Lou and I have a queen size bed and we can't all fit anymore because of Ty's IV and feeding tube.  These days one of us sleeps with Ty and one of us sleeps in my office on a crappy pull out bed.  It stinks!  We desperately need to upgrade to a king size bed so we can all enjoy sleeping together as a family again until Ty is all better.  In fact, Ty is still awake with me in bed...

I can't believe it's been a week since Ty came home.  I also can't believe that we were scheduled to start chemo as early as yesterday!  As much as I am afraid to delay much further, I am so glad we have more time to build up his strength and help him to be himself again for a while.  We have several baseline tests that need to be conducted before we can begin treatment at Sloan Kettering, so I am working to schedule them ASAP.  It's not easy, though, because Ty is young and requires sedation for a lot of these tests.  It just complicates matters.  Today Ty tried walking quite a bit, and he even took a few steps here and there without any support.  He is building up his strength day by day.  Those wobbly chicken legs need some meat on the bones, though... he got so thin!  Never in his life did he have skinny legs so it's strange to see him like this.  His belly is getting chubby, though, which makes me proud, and he has been giving m...

With the exception of a minor belly ache, today was a surprisingly uneventful day.  What a joy!  Ty and Gavin both slept late because they must have been totally wiped out from our trip.  Ty finished one of his antibiotics today, also, which I know he is very happy about because he hated it every time I hooked it up to his feeding tube.  The only problem is that Ty is still wide awake and doesn't want to go to sleep.  As I mentioned before, he pretty much rules the roost these days and now that he's back at home we're having a hard time regaining any authority.  So, he's sitting here late night surrounded by treats and watching Dora the Explorer.  And I remain at his beck and call, as usual.  Who cares, just having him next to me and seeing his sh*t eating grin every time he asks for something he knows he shouldn't have makes me so happy.  We don't have any appointments until Tuesday, so we hope to have ...

The worst part about going on a road trip with toddlers is being on the road.  It's hard to reflect fondly when the entire car ride (going and coming) is filled with whining, screeching, cheerios on the floor and "I gotta go pee pee!!"  We arrived home from Philly tonight around 7PM, and I waited to post so I could focus on the fun that was had once we arrived at our destinations as opposed to the sheer mess that is in front of me right now :) The past two days were dedicated to finding the best care for Ty, but at the same time we didn't want him to feel like he was going to yet another and another hospital.  We tried to make it more like a vacation for him.  We brought Gavin along (and Aunt Dawn - THANK GOD), and we had a very full agenda.  Yesterday we spent a lot of time at Sloan Kettering and boy are we happy we went there.  Although it isn't a dedicated children's facility, it is obviously a dedicated cancer facility and we loved what the ...

Today was nuts.  Between trying to work, trying to get some of our many bags unpacked from the hospital, and trying to prepare for the next two days in between administering medication every couple of hours the day just flew by.  Not to mention that we had to take Ty back to the clinic to try and unclog one of his IV ports.  They were able to get it working again no problem, but when I tried to use it this evening it was completely clogged again - Aargh! We will be on the road for the next two days.  We are off to Sloan Kettering tomorrow, then we're bringing the boys to PwC to visit with some of Cindy's work colleagues.  We also plan to stroll through the Central Park Zoo so Ty can see the polar bears - he's very excited about that.  Then we are moving on to Philadelphia for a meeting with the oncology team at Children's Hospital of Philadelphia on Wednesday morning.  We plan to spend the afternoon in Philly before heading back to New York so Ty and...

We took Ty to Magnolia Park today.  He can't walk around with strength yet, but we were overjoyed when he went on the swing and was all smiles.  He asked to go "higher, higher, to the sky".  Just like his old self.  It was wonderful.  He is the sweetest boy in the world.  We taught him that he has cancer, although he obviously doesn't really understand what that means, he does know that he's sick.  When we ask him what he's going to do to the cancer he says "I'm gonna beat it up!!"  We will try to capture that on video and share with you soon :)  I thought I had a good video today, but then Gavin grabbed the camera while I was still recording and threw it.  We love Ty so much we can't even express how all of this feels.  We're experiencing the most real and intense feelings we've ever felt in our entire lives, and our love for Ty and Gavin is stronger than ever.  Which is overwhelming because before August 11th, we cou...

Home sweet home.  Today was a wonderful day at home with the boys.  Gavin seems like he has grown six inches wider and taller -- he's just such a big boy!  We don't ever want that much time to pass again without being with Gavin.  Of course, Ty still finds him annoying and likes to refer to him as a "lunatic" but he is happy to have him around nonetheless.    We tried not to get caught up in the stress today, but at times that proved impossible.  As we said yesterday, it's a lot of work and trying to get through all of the bags we brought home from the hospital can be overwhelming.  Thankfully, we remind one another that the most important job we need to do over the next few days is to enjoy having Ty home with us.  Tomorrow we look forward to taking a nice long walk on the boardwalk and eating ice cream.  Ty also wants to visit with "Sissy" over the next couple of days and he very much enjoyed seeing Eva today.  So mu...

Wow!  What a whirlwind of a day.  All morning we were standing around biting our nails waiting for discharge, then as soon as we came home it was complete chaos until just now, as Ty finally settled down and is sleeping peacefully in our bed.  The reason why I call this post "homeWORK" is because I didn't realize how much work it would be to manage his care from home.  Without getting into the laundry list of ridiculous mistakes the hospital made upon discharge, the biggest issue is that they forgot to send us home with two of his prescriptions - one of which is an antibiotic that is not easy to come by and none of our local drugstores had it in stock.  In fact, if I hadn't realized it was missing from the list of meds on his discharge papers, Ty could have gone for a week without very important medication.  Lou was in the car trying to track it down for three hours until finally he was able to get it at a pharmacy in Franklin Square.  While tha...

Tomorrow will probably be the most celebrated Friday we have ever had.  We are all set to take Ty home for a week.  We will be in the hospital until his 11AM antibiotics are completed, and then we will be heading out the door.  Although this is only a short stop home before we begin chemotherapy, we feel it will make a tremendous impact on Ty's disposition.  It will help all of us to be together as a family, too, as we have missed little brother GaGa more than you can imagine.  The roadmap for his treatment thus far includes 6 - 7 cycles of aggressive chemo (21 days per cycle) and that will be combined with radiation during the fourth and fifth cycles if all goes as planned.  Chemo will be inpatient for 3 - 6 days (depending on the meds for that particular cycle) and then back home.  Of course, with each treatment we can expect intermittent visits to the hospital due to side effects, fevers, infections, etc. that can and will result when he is...

Ty has settled into a routine of making demands and snacking on treats all day.  He is certainly back to his old self, but with even more attitude.  When this is all over and we can declare him cured, we are going to have our hands full trying to un-do all of the damage we are doing by spoiling him like crazy!  We don't care, his every wish is our command for now.  The latest word from the doctors is that we will most likely be discharged on FRIDAY!  We can't wait to go home, and we think we will be home for about a week before starting treatment.  We already had our lessons on how to administer his feedings from home and it seems easy enough.  Ty will still be able to disconnect for several hours at a time so he can get around normally throughout the day and we are happy about that.  The only frightening part about being in charge of his medication is Cindy's tendancy to be late... for everything.  We are told he needs to be...