Thursday, September 30, 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 up all of Ty's medication for the day, and we were out the door just after 7.  Ty was scheduled for a PET and CT scan at Sloan Kettering at 1:30PM, but in order to prepare for the test, we had to arrive by 10:30AM.  The test requires an oral and an IV contrast, in addition to anesthesia, so Ty was not allowed to eat anything (NPO as the doctors and nurses say) from 12Midnight.  Try explaining to a three year old that (1) he can't have anything to eat or drink for hours on end, and (2) we are going out in the pouring rain before the sun is even up to sit in traffic for a couple of hours, so that (3) he can have more tests done at the hospital. 

As I feared, the car ride this morning pretty much consisted of Ty crying and complaining.  It was worse than I expected because he literally screamed the majority of the time.  The saddest part is hearing him say "Turn the car around Daddy.  I don't want to go haw-pi-dal, I NOT SICK!" over and over and over again.   When we pulled into the parking garage his face turned so long and he asked me if he was going to get another needle in his arm.  It just rips my heart to pieces.

Funny enough, the first half-hour of the car ride home after a very long day consisted of the opposite complaint.  Ty screamed that he didn't want to go home, he wanted to go back to the hospital because they have an awesome toy room and cool mini-boxes of Cheerios.  I had a bag of cheerios in the car for him, too, but it wasn't a box… and he wanted a BOX.  When we were about 1/2 hour from home is when he started asking "we there yet?... we there yet?..."  About 15 minutes from home he started screaming that he wanted us to stop the car because he wanted to walk the rest of the way home.  He insisted that he needed to get out of the car.  He was so relentless that we actually pulled over to let him out for a few minutes when we stopped to pick up Gavin before continuing home. 

Home sweet home and have a good night!  Here is a picture of Ty in one of the waiting rooms today.

Wednesday, September 29, 2010

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 typically participate but we don't want to take any chances at this time.  Second, please don't be annoyed if you receive a chain email forwarded to you by either of us because, again, we just don't want to take any chances :) 

Sort post today, wishing you all a nice, restful night.

Tuesday, September 28, 2010

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 around more and more each day.  In fact, the first visit to the playground was very emotional for him.  He cried because he couldn't do much more than the swings.  But, Lou brought him back a couple of days ago and he had a great time!  He wore himself out climbing, sliding and walking around as much as possible.  He's really doing great. 

I mentioned how Ty has been so emotional lately.  It's very difficult to manage his rollercoaster attitude with patience, but we are doing the best we can.  We try to remember that he is not even three and he's just trying to show some authority over the few things he can control in his life (like, what he wants to eat or when he goes to bed) and we have to forgive how whiney, clingy and demanding he has been.  Today I lost my patience with him because he refused to take a bath, but then in between sobs he told me that he didn't want to get his belly tube wet and he just wants to be better and I realized that he is more aware of what's going on than we give him credit for.  He is our little fighter and he's going to beat this. 

Monday, September 27, 2010

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 real and more intense now, but still... he is part of me (the most important part) and those quiet moments of simple togetherness are so special. 

Of course, his brother Gavin is just as important and we love him dearly.  He provides us with comic relief every step of the way through this journey.  Just look at this video.  How cute is he?  When Ty was 17 months old and he used to dance it was adorable, but Gavin takes everything to a whole new level.  He doesn't just bounce up and down to the music with a big smile... he spins until he falls.  He doesn't just go down the slide under Mommy's watchful eye... he flies down face first the second I turn around and bounces off the ground in hysterical laughter.  He doesn't just drop his food on the floor when he's finished... he tosses it onto the ceiling and climbs out of his high chair like Houdini.  In fact, he lifts the entire tray off of his high chair and throws it across the room.  He couldn't have a more perfect personality for the situation he is faced with.  He is one tough (and very funny) little guy.  This was taken over the weekend while Ty was getting his buzzcut in the background (you can hear the hum of the buzzer in the background).  For your entertainment:

Sunday, September 26, 2010

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 be strong and tough for what lies ahead.  Just look at this, can you believe it?


When he loses his hair in a few weeks, I think he is going to adapt well to all the cool hats we got for him.  His Nana already hit H&M and stocked up on everything from knit caps to fedoras.  All we need are a couple of 'do rags and we're all set.  I think what's going to break my heart more is when he loses his eyelashes.  The very first thing I said when he was handed over to me in the delivery room was "look at those long eyelashes, what beautiful eyelashes!"  I've met some moms who have been through this (amazing women, each and every one) and they tell me not to worry, they grow back even thicker and more beautiful.  That made me feel better.

Ty has a lot of preliminary baseline testing this week before we can schedule his first treatment, but it will be very soon.  His third birthday is on October 4th, so we hope to have next weekend at home so we can celebrate beforehand, but we are not sure yet how this is going to play out.  Ty has actually been running low fevers the past couple of nights, which complicates things and makes Lou and I terribly nervous.  We will keep you informed as things progress.  Thanks to everyone who follows Ty and to those of you who have reached out to us.  We are so grateful to have your love, your support, your positive thoughts and your prayers. 
 

Saturday, September 25, 2010

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 this post, and he keeps teasing me by pressing the buttons.  I promised I would be quick and I would post a picture of him and his brother.  Enjoy this photo of Ty sharing his ice cream with Gavin just two weeks before his diagnosis.  It was taken during our family vacation at Schroon Lake.   

Friday, September 24, 2010

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 neck all day and all night which warms my heart more than you can imagine. 

He tricked me today.  Ty said he wanted to put his shoes on and try walking outside on the sidewalk.  But, when we got outside he said he wanted me to carry him to the beach instead and that he would walk on the boardwalk.  It's a long four blocks when carrying 30 LBs in 80 degrees, but I did it because I expected to be rewarded when we got there.  Then, he said he changed his mind and wanted to get down to the water and he would walk on the sand.  I carried him into the ocean while me feet and pants got wet, but Ty said now he was too cold and didn't want to put his feet in the water.  Alas, I turned around to head back home and he did not end up waling outside at all.  I carried him all the way back as he smiled from ear to ear.  He just loves being in mommy's arms, and I guess I can't complain because I love it too (but, ow, my aching back!). 

Thursday, September 23, 2010

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 with family and friends.  Thank you all so very much for keeping tabs on our little fighter and for the outpouring of support we continue to receive.  We are so incredibly lucky to have people like you who care in our lives.  We feel very blessed. 

Wednesday, September 22, 2010

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 had to say.  We also loved the entire set-up on the pediatric floor.  Instead of being confined to a room, treatment takes place in a huge open sunny place where kids are free to interact with one another, play games, they host puppet shows, and so much more.  It really caters to the children and what they're going through and we expect to end up going back there mid week next week to begin treatment.  Of course, there are still so many medical details and questions that we have to iron out with the oncology team, but we are overall very happy and confident that it is the right place for us.

We spent the rest of the day in Manhattan at Central Park, where all Ty talked about was going to see the Polar Bears.  The Central Park zoo is perfect for the little kids because we were able to get in and out of there with ease, and the boys were in awe over the bears, the snow leopard, the sea lions and the penguins.  It was adorable.  We also had a very short visit at PwC!!  It was so nice to bring Ty to "Mommy's Work."  He was most impressed by the escalator and pressing the buttons on the escalator, but he was also very happy to meet my colleagues and see what it looks like at the office.  Of course, I was so happy to see everyone too!  After the visit to PwC, we hit the road and we took off for Philadelphia. We had an early morning appt at CHOP (Children's Hospital of Philadelphia). 

Philly was fun.  We stayed in a beautiful hotel and they were kind enough to upgrade our accommodations so we were extremely comfortable.  We hooked Ty up to his meds, rented Toy Story 3, put Gavin to bed, and Dawn gave Lou and I a break.  We went downstairs to enjoy a quiet dinner alone and just talk.  It was a much needed getaway.

CHOP is nothing short of amazing.  If Ty's treatment wasn't so complicated we would go there in a heartbeat, but it's just not reasonable considering what a long road we have ahead and considering the fact that a move to Philadelphia just isn't in the cards for the Campbells.  We don't feel that the oncology team had any more to offer than MSKCC, either, it's just that the facility itself is so beautiful and obviously so focused on providing the best care for small children.  I'm so glad we got our second opinion there so we can put our minds at ease that we are doing the right thing.  In fact, the head of oncology at CHOP will be calling the doctor's we are working with as MSKCC to discuss Ty's case and that made us feel like everyone really cares about the outcome regardless of where we end up going for care. 

After the appt, we took the boys for a walk all over the city, and we stopped at the Natural Science museum to see the dinosaur bones and the butterfly exhibit.  Ty was talking about the dinosaurs all morning, but then when we got there he was too scared and we had to leave immediately (he is so cute).  Gavin could care less, in fact we found him gnawing on a couple of dinosaur bones in the corner when it was time to leave :)  The butterfly exhibit bored them to pieces, but I personally found it fascinating.  Some of those things were bigger than my hands!

That's about it.  After a nice selection of street meat (I had the cheesesteak, of course) we headed home during rush hour and we were tortured for hours on end until we arrived at home sweet home with ten thousand bags to unpack.  At least we have bought some time before starting chemo, even if it's just a few more days, we get another weekend at home with our sweet boy and we intend to enjoy every minute. 

Tuesday, September 21, 2010

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 like it is more of a vacation rather than more hospital visits.  We will keep you posted on how those meetings go and what we decide to do as far as next steps. 

We decided not to begin chemotherapy at Cohen's Children's hospital on Thursday, so it is likely that we will have a few more days at home before being able to begin with Sloan Kettering or another institution.  Although we understand the importance of beginning his treatment ASAP, we also welcome the idea of a few more peaceful days at home sweet home before everything turns upside down again.

Please continue to keep Ty in your thoughts and prayers.  It means so very much to us.  Thank you. 

Sunday, September 19, 2010

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 imagine we were even capable of loving them more than we already did.  Before he was even sick, Ty consumed the majority of our thoughts every single day of our lives.  Now that is intensified beyond words.  We are so grateful for every single smile that crosses his face, and we jump to our feet with every single whimper. 

Being a parent is the toughest job in the world.  The love and responsibility is something that simply cannot be understood unless it's experienced.  The same goes for being the parent of a sick child.  We had always feared something like this might happen, and felt so incredibly sad for anyone we ever knew or anyone we heard of who was living that nightmare.  Now that we are living it ourselves it's as if we are in this new world of understanding and appreciation.  Don't sweat the small stuff is quite an understatement. 

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 of these 5 weeks, it's nice to have an ounce of normalcy in our lives for a change.  Ty misses going to school and he misses seeing his best buddy "E", but he is otherwise doing great. 

Saturday, September 18, 2010

HomeWORK

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 unwinding, we also had two nurses visit the house to teach us how to administer his medication through IV and his G-tube (feeding tube).  That was interesting with 16-month Gavin running around tossing around everything he could get his hands on.  Hey... he was happy to be home, what can I say. 

I feel like all I've been doing is trying to get some things in order in between the constant preparation for Ty's medication, and then cleaning up after the whole process.  The schedule is something like this.... 11PM, give one antibiotic via G-tube, one via IV.  12AM, flush his IV and remove the bag from his 11PM infusion.  5AM, wake up and administer IV antibiotic.  6AM, flush his IV and remove bag from his 5AM infusion. 8AM administer two medications via feeding tube.  11AM, give one antibiotic via G-tube, one via IV.  12Noon, flush his IV and remove the bag from his 11PM infusion. 5PM, administer IV antibiotic.  6PM, flush his IV and remove bag from his 5PM infusion. 8PM administer two medications via feeding tube.  Start again with the 11PM dosing.  Also, remember to hook him up to a 12-hour feed overnight from 8PM - 8AM. I feel like I did when I was breastfeeding, can't get anything done in between!

Despite how overwhelmed we are, this homecoming was so very special for Ty and we are so so happy to be home.  Thank you so much to our friends and family who sent cards, gifts, balloons, etc.  Ty really felt special walking through that door again.  His smile reached across the room!  What a difference it makes to be home, too.  He is standing with much more confidence, playing, talking, drinking, eating, everything he needs to be doing to get strong.  And being with his little brother again is such a blessing for both of them - they love each other so much (although I definitely have to keep my eye out on GaGa so he stays away from all of Ty's tubes because that kid is crazy with a capital "C").  And, special thanks to our great friend Yasmine who came over to save me during a high-stress moment this evening and allowed me to have some fun tubby time with Gavin.  It feels great to be home.  Good night to you all and thanks for keeping track. 

Thursday, September 16, 2010

TGIF!

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 completed the first mile in the marathon, but he has made tremendous strides nonetheless.  As you know, he has a fighting spirit that will keep him charging toward the finish line.  Expect us to post lots of smiling faces and family photos over the next few days :)

Wednesday, September 15, 2010

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 for the Campbell's :) 

Ty is generally happy here now.  We mentioned how much anxiety he suffered when he was in the pediatric ICU, much of which was a result of the severe pain he was experiencing, and the back-to-back procedures, blood draws, cultures, etc.  Now that his pain is managed, his medication is minimized and he doesn't need 24-hour care, he is a whole new person.  See for yourself, Ty feels "betta"!

Tuesday, September 14, 2010

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. 

Monday, September 13, 2010

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. 

Sunday, September 12, 2010



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 room playing with his new toys from Uncle Billy, Aunt Lorraine, Suzanne and Mike, Pat and Janet (thanks everyone!).  It was wonderful.  Then he had a sponge bath, reading time, Dora, more lollipops, and hopefully bedtime soon. 

Tomorrow Ty has another MRI scheduled. His last scans show that he had some air in his cranium, which could be responsible for causing such significant head pain, especially when he moves around or lifts his head. We are praying, praying, praying that tomorrow's scans will show a decrease in air, which would confirm that his CSF leak has been successfully patched and no more air is getting in. If we find the opposite, more surgery is in Ty's near future and we hate to see that happen given the tremendous strides he's made over the past three days. The last thing we want is additional recovery time with the chance of more complications. We just want to take him home for a while before he needs to begin treatment.

We are so grateful for your continued prayers and positive energy. They truly helps us through this day by day, and helps put the smiles on this amazing face :)

Surrounded by sugar

Saturday, September 11, 2010

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. 

Friday, September 10, 2010

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 Daddy which was... "Sorry little buddy, no yogurt".  We hung up the phone, and Ty said "I want to call Nana."  He's no dummy.  He knows Nana gives him whatever he wants :)  That made mommy laugh out loud.

As a reward, tonight we celebrated with a lollipop party when Uncle Bill and Aunt Lorraine came to visit. Ty really enjoyed it, and boy did he deserve it! Fingers crossed for a peaceful night sleep and a good day tomorrow.

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 in 6 days) and his interest in the toys around him.  He even drew some beautiful "art" on his pumpkin. 

Ty talked a lot about his upcoming birthday on October 4th.  He wants to have a Max and Ruby cake and a party at Grandma's house.  He wants to invite his cousins James and Ryan, and his friends Eva and "E".  Gavin is invited, too.  Ty has had so much energy this evening, Lou and I are exhausted.  In fact, right now Ty is wide awake watching a Dora DVD while Lou is sleeping in the chair next to him and I am barely keeping my eyes open myself.  Maybe because I don't want this day to end. 

Tomorrow Ty has more surgery, a feeding tube and a medi-port are being placed.  They are relatively minor surgeries compared to what he's been through, and both will help to make him stronger for his therapy in the near future.  Thanks to all of you for your continued love and support. 

Wednesday, September 8, 2010

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. 

We just have to sit back and praise him for his fighting spirit.  We look forward to him taking his "I'm sick of this s*it" attitude to a whole new level so he can proclaim himself a survivor after all of this is through.  Where there's a will there's a way... and boy is there a will. 

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!

Monday, September 6, 2010

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 around some remote controls, threw around his goldfish, climbed the furniture, rode the cars into the walls and then went home.  We enjoyed having him around today and we can't wait for the next visit. 

Sunday, September 5, 2010

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!) and we met him there for a few hours.  He is also coming to spend the afternoon with us tomorrow, so we are very excited. 

Saturday, September 4, 2010

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. 

Friday, September 3, 2010

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 rather be than right here next to our beautiful Ty :) 

Thursday, September 2, 2010

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).

Wednesday, September 1, 2010

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 enjoy some chocolate milk and ice cream.  This also gave Ty more confidence with swallowing and showed him that his mouth "does work" - he can taste his food.

The worst part of the day was receiving the news that Lou and I are getting kicked out of the Ronald McDonald House. Ty's infection has resulted in "isolation status" at the hospital, and the Ronald McDonald House doesn't allow families in our situation to stay in an effort to control spreading bacteria that could be harmful to other immune compromised kids. It's okay, we can return in a few days when his antibiotics cycle is complete. In the meantime, we will be tired from schlepping back and forth, but we will figure it out.  

Lou is especially upset, because he is so mad at McDonald's but he loves it too much to commit to giving it up. 

XOXOXO from Ty