I didn't have a chance to post last night because I passed out nice and early.  Ty didn't sleep well at all on our first night home so I was hoping to catch up on some much needed sleep. No such luck.  Lou and I were up with Ty from 12:15AM - 4AM watching movies and meeting his demands.  His schedule is way off because of all the time in the hospital.  There were times I wanted to get mad at him, but then he would be so cute when he says "I can't sweep" and he let's out these big, grown up sighs.  We have an appointment this morning at the day clinic.  Ty needs to have the needles on his mediport changed once a week (which is truly a horrible, terrible experience for all of us - he is terrified of it).  He also needs bloodwork done and his weight taken before starting chemo again on Monday.  We are going to bring baby GaGa with us, so at least they can have some fun together in the giant toy room there....

Today the Tumor Board at Sloan Kettering concluded that Ty's first cycle of chemotherapy was effective.  The pressure on his brainstem, which caused such major setbacks last week, has decreased by more than 50% and he is showing major signs of clinical improvement.  The tumor appears smaller than it did 10 days ago, which shows that what we hoped was blood is now being reabsorbed by his body.  He's talking better, walking... he's getting his old self back.  We are not out of the woods by any means, this is still only the beginning, but at least it means we can continue with the next cycle of chemo as planned.  We have a pre-chemo appointment on Friday and we are scheduled to check back in for round two starting Monday.  It stinks because we worry that just when he starts feeling good and getting comfortable at home, we have to start all over again.  Poor little guy.  He is so strong.  Psychologically, this has been a tremendousl...

Three-year olds can be so smart.  Ty has been reluctant to show any sort of excitement about going home.  I swear, it was as if he was thinking, "I'll believe it when I see it."  Every time I asked him if he wanted to go home, he would say "no!" very firmly.  It wasn't until after his MRI today, when the nurses actually disconnected him from his IV pole, that he started to smile and ask about going home.  He was very smiley on his way down the elevators and out the door, and he was talking to everyone, which shows he was in good spirits because when he's feeling sad he is very shy. He certainly isn't himself yet, and I completely understand, but he is getting there.  He is beyond attached to me, I can barely put him down or take him off my lap, let alone leave the room.  The hardest part is seeing how needy he is when I try to spend time with Gavin.  Poor Gavin hasn't been home for 2 weeks and all I want to do is kiss him and hug him but I have...

Some days, I still can't believe this has happened to me... to us.... to our beautiful, undeserving Ty...  Sometimes it still feels like it isn't real.  We took a family vacation the last week of July.  I was just a normal, working mom with two baby boys taking some much needed time off.  At the time I thought I knew what stress was, trying to balance deadlines and dinnertime on a daily basis.  I remember I even facilitated a virtual work meeting while at the lake house and kept up on my blackberry so I wouldn't come back to a tremendous workload.  A week after I returned to work, I found myself taking my perfectly happy, healthy boy to the hospital on a hunch that something just wasn't right.  Today, we are still here.  Four surgeries and three hospitals later, I'm still laying next to my now 3-year old boy in a hospital bed, computer on my lap and Max and Ruby on TV.  Sometimes it's so routine it's as ...

Although our breakthrough day yesterday was followed by a sleepless night with several headaches, we had another wonderful day today without any episodes of pain.  Ty always tends to suffer more at night, so we don't believe last night was a setback, just par for the course.  He is an amazing little boy. We are laying in bed together and Ty is yelling for me to put the computer away, so more tomorrow.

Ty went the entire day without pushing the button on his morphine.  We lowered the doses on his pain medications, and he spent the majority of the day awake and active!  We are so excited.  Although we won't know until Tuesday's MRI, we believe this is a strong indication that the pressure he was feeling was related to intracranial bleeding that is now being slowly reabsorbed (aka tumor destruction ) as opposed to tumor growth/progression.  I can feel this to be true straight through my bones.  We are all going to sleep well tonight.  The last time Ty had a major breakthrough when we were in Cohen's Children's Hospital, our good friends Stan and Beth were there to witness him standing and walking for the first time in weeks.  Tonight, Stan and Beth were here again, and they gladly helped us "kick back" a bit by providing dinner and Coronas.  We are having a mini-celebration here in our hospital room, and having dreams of going home a...

They say babies do all their growing while they sleep.  I think they do all their healing that way too, so if that's the case Ty will be healthier than all of us in no time :)  He is just sleeping the days away, which is fine with me.  When he is awake, he is in a lot of pain.  He does have a few moments throughout the day where he cracks a smile and considers trying to sit up to color or watch a movie, but it doesn't last long before his head starts hurting and he wants to lay back down.  The doctors keep reassuring us that this is to be expected given his situation, and it's going to take time before his pain dissipates.  Until then, we are keeping him as comfortable as possible with medication and lots of rest.  I can't rave enough about the care he is getting here at Memorial Sloan Kettering.  The nurses are so kind and caring, the doctors are very attentive, and the facility is top notch.  Of course, it would be nic...

For the most part, today has been a repeat of yesterday.  Ty slept all day, with the exception of 7-9AM (when we watched a movie) and 5-6PM (when he had to have his daily shot and his weekly dressing changed on his mediport).  Gavin is still running wild and practicing bad habits while he is under the supervision of his Aunts and Uncles :) We did get some good news today, Ty's white blood cell count is going up and he is no longer considered neutropenic.  We still expect him to feel crappy over the next week or so due to the cranial bleed, but he isn't at such a high risk of contracting an additional virus or infection, which is a relief.  We may even be able to go home in a few days. Woo Hoo!

Ty is experiencing terrible head pain.  His doctor said that this type of cranial bleeding results in the worst type of headache imaginable; worse than migraines, worse than what he experienced with his meningitis.  It probably won't dissipate until later this week, hopefully by this weekend.  We also expect to be in the hospital for another week (at least).  So, we have him on a lot of pain medication and he is spending most of his time sleeping it off - which is fine with me.  I wish he could sleep through this entire ordeal and wake up cured.  I find peace knowing that at 3 years old, this experience will help to mold the man he becomes, but he won't remember it in detail.  All good things.  Additional imaging is scheduled for Friday and Tuesday.  Hopefully the team will be able to determine from the new scans whether or not his tumor is growing or shrinking, whether or not chemo will continue or if we need to consider another surgi...

Ty's hair began to fall out, and we have been changing his pillowcases as often as possible to keep him from itching.  We tried to prepare him by giving him a crew cut while he was under anesthesia the other day (for his MRI) and he doesn't seem to be emotionally affected by it, which is a relief.  He does, however, seem pretty down in the dumps today.  He was physically better than yesterday and he sat up for a couple of hours to play games and do some crafts, but he was generally very melancholy through it all.  I hope his counts begin to go up over the next few days so he can have more energy and go home for a few days.  He's been sleeping peacefully for several hours now. Because Ty's tumor is pressing against his brain stem, the doctors don't always know how to handle his situation.  For example, any other child who has been running fevers for 6 days straight, and who have been neutropenic for more than a week, would be undergoing hea...

Ty is still having trouble speaking and he has been experiencing severe headaches since yesterday, but he is showing some improvement and the doctors expect that to continue.  He is on a morphine drip, which has made a huge difference and he is sleeping so well now as a result.  He spent the entire day in bed with the shades drawn, and it is starting to feel like a repeat of our last hospital stay when he had meningitis and suffered day after day.  I just pray that his suffering won't last nearly as long this time around, and the doctors delivered some news today that gives me tremendous hope that I am holding onto with every bone in my body. The radiology team delivered a full report on the results of the MRI, and they determined that some of what appears to be tumor growth might be attributed to bleeding that has accumulated at the tumor site instead.  So, they feel that blood (as opposed to cancerous tissue) may be building up in the mas...

I could write a chapter on what has happened to Ty in the last 48 hours.  We have had a number of medical scares, maybe's and what-if's that resulted in an emergency MRI this afternoon.  Instead of sharing the details that led up to the MRI, all that matters now is the fact that Ty's tumor has grown significantly in recent weeks, and it is causing a number of neurological issues that he experienced pre-surgery (such as difficulty speaking, facial weakness, limited mouth motility, etc.)  This is obviously very scary and I wasn't sure I would find the strength to post an update, but I also learned from all of Ty's supporters how important it is to remain stong and remain positive.  I can tell you honestly that the doctors have said this is not uncommon, it happens, and it doesn't mean that the chemo isn't working.  This will not change any plans for his treatment in the immediate future because we need to be patient and give the chemotherapy time to work....

Ty has been making the most of his time here.  We did lots of arts and crafts today.  He decorated two foam pumpkins and he created some lovely beaded bracelets for Grandma and Mommy.  We'll post some pictures of his creations tomorrow because he doesn't like me spending any time on the computer tonight.  This will be a short post so I can get right back into bed with him.  Ty spent most of the day resting and sleeping because he's been running fevers consistently.  Every four hours we know it's time for more Tylenol because he becomes very cranky, his face gets flush and he wants to lie down.  He hasn't eaten more than a few bites of banana and a few sips of milk over the past two days, so we are supplementing with a lot of formula feeds in his belly tube.  Last night he got sick from it in the middle of the night, but he has otherwise been tolerating it well during the day.  We need to keep him well-nourished!  Thanks ...

Ty was running a fever late Tuesday night, so we ended up in urgent care - which is required any time a chemo patient has a temperature.  He was so adorable through it all.  In fact, when we left the house at 3:30 in the morning on Wednesday, he was wide awake and in a surprisingly good mood.  He didn't put up a fight about going to the hospital, which shocked me.  And, thank God, too.  Because if he screamed the entire way after I only got 3 hours of sleep I would have gone completely insane.  We stopped for gas and a buttered roll at "On the Go" which reminded him of our routine when I used to take him to preschool.  He asked me to put on a CD and he sang his abc's and "wheels on the bus" all the way to the hospital.  Yes, I have become THAT mom who drives around town in a family car with "wheels on the bus" blasting.  Lou and I tried to resist, but somewhere along the lines the children's CD collection in the car began to ...

Ty seems to have frequent mood swings lately, and when he swings downward he is very hard to please.  One thing he does very often is he whines and moans about being hungry, but he won't eat anything we offer him.  Nothing.  I even take him to the supermarket to pick out anything he wants and he still just cries and doesn't want to eat a thing.  I worry that maybe he is suffering from a metallic taste in his mouth or something, we were told that can happen. We started giving him his daily injections under the skin in his arm.  He hates it, of course, but for a three year old he is so awesome about it!  I can't believe how strong he is through all of this.  He takes his meds like such a trooper, and he still gives us super huge smiles all day long and the best hugs around the neck in the world.  Tomorrow he wants to fly a kite at the beach again.  I hope he is feeling up to it.  The outdoors is good for him and I hope we can...