Showing posts from September, 2010

Musings of a three-year-old

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 the next hour.   We got dressed, packed

A short post in anticipation of a long day tomorrow

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 luck, because we don't ty

A marathon day

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 strength.  He is still very weak, but he walks a

Hugs from the heart

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 the same.  Yes, it feels more r

Big boy haircut!!

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 getting older because he needs to b

The sleeping situation

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 as I'm trying to complete th

How time flies

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 me crazy big hugs around the n

Finally, an uneventful day

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 another easy going day tomorrow, and a weekend filled w

Making memories

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 doctor's

Busy, busy, busy

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 Gavin can feel li

Another good day with our little fighter

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 couldn't im

Best. Day. Ever.

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 much has changed over the course o


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 that whole fiasco was un


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 immunocompromised.  Ty has only

Looking forward to Friday

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 on a strict schedule which may be a challenge

One foot out the door

Ty is almost back to his old self.  He's been sitting upright watching movies, looking through toy magazines and picking out presents, eating whatever he wants, and best of all, smiling a lot.  The only thing we can't get him to do is put on some clothes and get out of bed to practice walking around.  We think he is enjoying being catered to a bit too much as he sits in his bed making endless demands of everyone.  We have been working toward getting Ty discharged this week, and we may be able to get him home as early as Thursday.  Hopefully we will know for sure by tomorrow's post.  If not Thursday, we expect to be home no later than this weekend.  It won't be for long, but just getting Gavin back and having the whole family together in our own house will be better than anything else we can imagine. 

Movin' on up!

Ty's MRI showed a significant decrease in the air that was trapped within his skull, so we have been officially released from the pediatric ICU and we are moving on up to the fourth floor.  Woo Hoo!  Thanks to everyone for your prayers.  We are working toward getting out of the hospital completely and hope to share good news pertaining to that over the next few days.  In the meantime, we met with the oncologist team here at Cohen's Children's Hospital and they don't want to delay chemotherapy treatment any more than a week.  That was really hard to hear because we want to give Ty a break from all of this soo badly.  We are still seeking second opinions and have set up meetings with Sloan Kettering and CHOP so we will keep everyone posted on the turnout.  Regardless of how soon we begin treatment, we are determined to get him home - even if it's just for a few days. 
The intimate lollipop celebration that started a couple of nights ago has been taken up a notch.  After he ate his way through the supply that Grandma and pop-pop brought this morning, Stan and Beth replenished the "dum-dum" supply and we are having a full-blown lollipop party that lasts all night.  That's right, all night, thanks to the sugar :)  Ty has been enjoying every type and every flavor imagineable, and we are happy to oblige. He doesn't care to brush his teeth afterward, but as his parents we don't mind if there are a couple of cavities in his future... he's got bigger fish to fry. He is feeling great and looking so much better day after day. His feeding tube is working fine, and he doesn't seem too agitated by all of his new "hardware". We tried some icepops and cheese today, and it was successful.  His speech is improving with his spirits, and he even got excited enough to get up on his feet today!  We had him standing in his roo

In remembrance

Today is a day for remembering and reflecting on the tragic events that occurred nine years ago.  The Campbell Family will return tomorrow with more updates from Ty's bedside. 

Surgery success

As a parent, seeing our baby go into the OR wasn't any easier the third time around.  It was scary and heartbreaking.  And, of course, surgery lasted twice as long as we expected which kept our anxiety levels high while we sat in the waiting room for hours.  But when we returned to the room and saw him waking up, we were so happy to see that he was in relatively good spirits, and he felt better and better as the evening went on.  After his breakthrough yesterday, Ty woke up this morning asking for more yogurt.  Of course, he's "NPO" for 12 hours before surgery which means he can't consume anything, not even water.  Try explaining that to a three-year-old who was being praised for every small bite of yogurt the night before.  Poor Mommy had to tell him over and over that we had no more yogurt and he wasn't allowed to eat.  Finally, he said, "I want Daddy".  So, we called Daddy and Ty turned on the waterworks.  Ultimately he got the same story from D

Finally! Ty feels better

What started out as an awful morning with lots of tears and lots of testing, turned out to be our greatest day with Ty since first checking into the hospital.  Rather than run through the laundry list of today's medical procedures and mishaps, we are going to keep this light and focus on the amazing turnaround we returned to after an early dinner at... you guessed it... McDonalds.  We went out for a couple of hours with Gavin which was very special in itself and he loves the french fries just as much as Lou does.  At around 6:30 this evening, we returned to Ty's room to find him wide-eyed and eager to see us.  He began rattling off things he wanted to eat, games he wanted to play, shows he wanted to watch, and more.  He stayed in Mommy's arms for more than 2 hours, which was the most precious part of all, and he showed significant improvements in every single way from his willingness to carry on a conversation, his ability to sit-up again, his appetite (first time he ate

Where there's a will there's a way

Poor Ty.  He has become extremely apprehensive.  He is simply fed up with being stuck in the ICU, and he started making it known by acting out in anxiety.  As you already know, he pulled out his feeding tube a week ago, then a couple of IVs... but that was nothing.  Lately he has begun pinching, picking and pulling at everything connected to him... he refuses to wear a shirt, or even keep a diaper on sometimes, and he bites his lips until they bleed.  This morning he pulled out his central line, or PICC, which ran all the way up his arm into his chest.  He was warning me that he wanted it off for a couple of days now, and now I realize I need to take my little man more seriously.  He has found a way to make himself heard and although it is so painful to watch him react this way, at least he is getting much more attention from the nurses and attendings.  Everyone on staff here is on pins and needles wondering how they are going to appease this strong-willed (almost) three-year-old. 

Imaging scheduled for tomorrow - hopefully we will get some answers

Ty has been doing much better and he is showing us wonderful glimpses of his old self.  Smiles, jokes, laughter... although they are few and far between it is happening and it is such a sight for sore eyes.  His pain is still holding him back from any physical activity, though, and the persistent fevers keep us on pins and needles wondering what else could be wrong.  He isn't showing any signs of additional infection or virus, so no one seems to have an answer as to why he is still running these fevers.  Tomorrow he will be getting another MRI and CT scan, so hopefully we will have some more answers and figure out how to better address his issues so we an get him closer to home!

Slow and steady wins the race

Today was very similar to yesterday.  Ty had some good moments, one where he even gave his Daddy two hugs around the neck from his hospital bed.  He tried to eat a banana but got frustrated because his "mouth not work" the way it used to.  With physical therapy that will correct itself, but he doesn't understand that just yet.  A feeding tube inserted into his stomach might be a short-term consideration until he can get back in shape. We read a lot of books, watched some Max and Ruby and played Leapster.  We dragged him out of bed onto Daddy's lap for about 15 minutes, but his head was hurting him and we put him back down so he could be more comfortable.  Although it's taking much longer than anyone expected to get better and to get out of the ICU, we hope he continues on this path toward recovery.  The tortoise wins the race.  Gavin spent the afternoon at the Ronald McDonald house and tore up the playroom (and every other room he could get into).  He tossed a

What a great day!

Today was a great day.  Ty is finally feeling better.  For the first time in almost two weeks, we had the curtains open all day and he remained awake and stimulated for hours on end.  We read books, we played video games, we watched DVDs, we had conversations and he sat cradled in Mommy's lap for over an hour.  It was so nice to get him out of bed.  It still hurts him very much to be picked up and moved around, but he is doing it.  If this continues, and it will, we will push him to start eating again tomorrow.  He hasn't eaten anything so far because it hurts him too much to sit upright, but we think we can get him to start small with some of his favorite yogurts tomorrow. On top of a terrific day at the hospital with Ty, we have checked back into the Ronald McDonald house and we were able to spend the afternoon with Ty's baby brother today while Nana and Papa entertained Ty.  Aunt Theresa and Uncle Harry took Gavin to a birthday party (happy first birthday Nicholas!) an

A breath of fresh air

Depite a rough day today, we did have Ty out of bed for a short period of time and we were able to sit him up near an open window.  Finally, we had a nice breeze blowing through the room for a change and he said it was a "boo day" which meant "beautiful day".  He still loves the outdoors and can't wait to feel better.  Ty is having a tough time recovering from two surgeries and meningitis, and we think it's going to be a few more days before his severe head pain subsides.  We are excited for that day.  The hospital stay is starting to really take a toll.  The good news is, we have been permitted to check back into the Ronald McDonald house tomorrow, and Lou just might celebrate with a #2 meal, large, of course, cheeseburgers plain (just ketchup).  That will be a huge help. 

20 nights and counting

The pathology report on Ty's tumor has finally been completed.  After careful consideration, the cancer has been recategorized, it is no longer believed to be Chordoma.  Rather, it is a . ...drumroll.... non-rhabdo epithelioid sarcoma.  Still a very rare cancer for someone his age, and not one that can be easily treated -- but it IS treatable.  Therapy will likely include a course of chemotherapy treatments, followed by radiation.  We still have a lot of research to do and discussions to have, so more to come on that. Tonight will be the 20th night Ty has spent in the hospital. We can't believe it has been that long! That also means that there have been 20 nights without Gavin, which is so hard. We will get to spend time with baby GaGa this weekend and we can't wait. Tonight is also Lou and Cindy's 5 year anniversary!!  Labor Day Weekend has always been one where we like to go away together and get away from the kids, but this anniversary there is nowhere we would

Ty says goodnight

This video was taken just a few weeks ago.  A goodnight kiss and a knock knock joke, with love from Ty.

Meanwhile, Ty's baby brother is doing fine

For those of you on Facebook, you may have seen a photo of Gavin that I posted the other day wearing a brass knuckle necklace at Aunt Debi's house (!!!).  Baby GaGa (that's what Ty nicknamed his brother) is doing just fine.  He couldn't have a better personality for the situation he is in.  He has been taking turns between Aunt Theresa and Aunt Debi's house for the time being, and he is being so good.  Just look at how well he's adapting. They even got him off those baby bottles and onto a big boy bottle (tee hee).

Meningitis confirmed - Ty is sleeping it off

At least we have confirmation that infection in Ty's cerebral spinal fluid is the cause of the fevers and the pain he has been experiencing since Friday night, and his medication has been adjusted to aggressively fight this infection. As a result, Ty was sedated today for a sterile procedure. They placed a PICC line in his arm so we don't have to continue replacing his IVs and so we can provide him with nutrition intravenously (since he pulled out his feeding tube yesterday). Since the procedure, which started around 1PM, he has been pretty much sleeping it off, which is a good thing because there is a lot of healing going on. The highlight of the day was that Ty passed a swallow study this morning. He was very reluctant to do it, but we forced the issue and we are so glad we did because it proved that his cranial nerves were not further damaged in surgery and he maintained the ability to eat on his own. A tremendous victory! We can't wait until he feels better so he can