Sunday, October 31, 2010

Trick or Treat

Thankfully, we have no news on the medical front to report todauy.  Just lots of Halloween fun.

Surprisingly, Ty was "okay" with the fact that Gavin had to dress up as Superman instead of Spiderman today.  He was just happy it was finally Halloween!!  We met up with all of our friends in the neighborhood and joined the adorable trick or treat caravan.  Ty was totally sweet as Spiderman...


And baby GaGa made a super handsome Superman...


Ty was so excited for Halloween, he even wore his new Spiderman pajamas several nights in a row beforehand so he could get into character (thanks so much to Mary Palotta at the Guardian Brian Foundation).  He also had some fun with the vampire teeth that a sweet college friend of mine, Katie, sent with a fun package for Ty.  I could just eat him up. 



Gavin and Daddy had a great time trick-or-treating, too.  It was the first Halloween that Gavin was old enough to get excited about, and I think he really enjoyed it!!



Saturday, October 30, 2010

A fun day at the hospital, followed by a great day at home

We returned to the hospital yesterday for a morning appointment at the day clinic.  It was a simple visit, Ty had to have bloodwork done and the needles in his mediport changed (they need to be changed once a week).  The needle change is the worst, Ty's face is soo sad when it comes time for that and he cries like crazy, but it's fairly quick so at least he calms down soon after.  I just feel bad because now every few hours he furrows his brow and asks..."mommy, they gonna change my needle?" and I tell him "no. not today, not until next week," but he doesn't understand the concept of next week so he asks me again a few hours later.  He is scared, and I don't blame him, but aside from the needles he is so brave and really very accustomed to everything.  He never even complains when the nurses take his weight or his vitals (in fact, he helps them by sticking out his arm for blood pressure before they even ask, and putting his finger out for the heartrate, things like that).

It was the cutest day at the hospital yesterday, I was so happy we were there on the Friday before Halloween.  Each and every staffer -- the nurses, the receptionists, the doctors and the surgeons, were dressed in costume.  They also had seven wardrobe racks filled with donated costumes so every kid could dress up, and they decorated the entire floor.  It was adorable.  When we first checked in there was a magician performing for all the kids.  Then, there were special Halloween arts and crafts followed by a huge trick-or-treat parade through the hospital (Ty and Gavin got soo much LOOT!).  It was fun.  Ty was tired and a bit apprehensive so he wasn't as excited as he might have been under different circumstances, but it still made it much easier to be there.   

Ty seemed to really understand the difference between the day hospital and when we are admitted as inpatient, so we decided to explore the option of treating Ty's chemo outpatient next week instead of staying overnight Monday and Tuesday.  The doctors at Sloan are so kind and understanding.  They agreed that if it is better for Ty mentally, then we should try the outpatient approach for this round and see how it goes.  Seeing what a difference it makes for Ty to be home, Lou and I are excited about this option and we are now scheduled to start chemo on Tuesday, Wednesday and Thursday next week (but we will go home each night).  Yes, it's gonna be an exhausting routine for a few days, but everyone knows nothing feels better than being in your own bed -- especially when you're not feeling well. 

Today we had a really relaxing day at home, and Ty is getting back to his old self.  When I see him looking and feeling so much better with each passing day, it's hard to believe that he has such a terrible sickness inside.  It's just not fair that we have to start this all over again, to make him so sick again.  This simply has to work. 

Aunt Dawn stopped by this afternoon and we all went to Party City to buy a new costume for baby GaGa.  Ty has a Spiderman costume and Gavin has a Superman costume, but Ty has made it VERY clear that he wants Gavin to be dressed like Spiderman, too.  We tried, but there weren't any Spiderman costumes left!  Ty is not taking no for an answer either, so it should be interesting tomorrow when we get them dressed up to go trick-or-treating.  I predict Ty will have a bit of a tantrum when he realized that GaGa isn't dressed like Spiderman per his request. 

This evening Lou and I were able to relax with our friends Grace and Rossano.  It's always so great when we can get together with friends the few times we have the opportunity, so thank you guys for coming down and giving us a couple of hours of normal, everyday conversation :)

Happy Halloween!  I promise to post pictures tomorrow. 
XOXOXO, with love from Ty

Friday, October 29, 2010

Walking zombies

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.  I think MSKCC is hosting some Halloween activities today, which Ty should love.  Thanks for reading out posts!  :)

Wednesday, October 27, 2010

Ty 1 - Cancer 0

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 tremendously difficult for Ty.  Each time he switches environments, he is very apprehensive and very depressed. But, unlike an adult, we have to remember how resilient kids are and how quickly they recover.  He was sad this morning, indecisive, nothing would cheer him up and he napped for almost four hours... But, by 5PM, he was already showing huge improvements.  In fact, we had so much fun tonight watching movies, reading new books, doing arts and crafts.  He is in great such great spirits now, I am so happy.  He has said and done so many things tonight that I will cherish, I wish I had a video camera on him 24 hours a day so I could capture each and every one of those special moments and those glowing, sparkling smiles.  At the risk of sounding cliche, that face and the adorable things that come out of that mouth of his are just priceless.

Tuesday, October 26, 2010

Back home

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 to be careful not to upset Ty too much.  It's a balance.  Gavin is also thrilled to be home, he has already destroyed the place :)  He is so funny and so cute, we really missed him.  He's gotten so big in just two weeks!

Needless to say, we are all happy to be home.  And, I'm happy to report that although we won't have the final results from Ty's MRI until later tomorrow, the doctor's initial reading shows that the pressure on the brainstem has decreased significantly and they will most likely want to continue with the chemotherapy regimen (which is what we were praying for, because that means it's working so far).  Tomorrow's post will be more telling on what our next steps are... but we expect Ty to be home at least through the weekend so he can enjoy trick-or-treating.  In fact, the other day I asked Ty how he would like to decorate his room because he needs to get a new, more accommodating big boy bed, and he said he wants a Halloween room :)

Monday, October 25, 2010

Still surreal sometimes

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 if my life has been like this for ages, other times I can't believe it's been more than a couple of weeks, let alone almost three months.  Life can change so unexpectedly.  Surprisingly, you learn to accommodate.

Although it's unfair to Ty that I am learning life's lessons at his expense, there are some very important perspectives I will always carry with me after living this nightmare.  First, that people are kind and good.  I have been so surprised and touched by how many beautiful people have been so tremendously supportive--some of whom I haven't been in touch with for over a decade, some of whom I've never even met.  At the beginning of all this I was warned that I may end up being disappointed in my friends and family because times like these can be very telling.  Instead, I feel the opposite.  My best friends will never change and will never disappoint.  My family has shown me how strong our ties are, even those family members who live furthest away and those that I don't hear from frequently have been sending their unending love and prayers and giving me strength.  My work colleagues have been beyond supportive.  My oldest friends and acquaintances have sent caring emails, checked in on me via facebook, sent gifts, attended fundraisers and made donations.  Complete strangers have become true friends.  I hope to be a better, more thoughtful person from this day forward as a result of this.

The second biggest learning to come out of this is my overall perspective on life.  I used to get so stressed over everything, especially trying to find time.  Now, I think "what's the worst that can happen?"  So I miss a deadline, or I am late on a payment.  The worst thing imaginable is happening right now, and this, too, will pass.  Time will go on and eventually it will be okay.  In fact, today Lou got in a car accident driving my new car.  It was bad, but thank God no one got hurt.  That's all that matters.  The car will get fixed and I could care less. 

MRI tomorrow, then we are homeward bound!!  Hopefully we will be on the road around 2PM.  The tumor board meets on Wednesday to discuss his situation (yes, there is such a thing as a "tumor board") and we will find out their recommendations on next steps Wednesday afternoon. Thanks to everyone for your support.

Sunday, October 24, 2010

Nothing new to report

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.

Saturday, October 23, 2010

A breakthrough day!

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 after a good MRI on Tuesday.

Grandma and Pop-Pop also visited today, and they came armed with several new toys.  The only problem with that is... now Ty keeps telling me to call Grandma and tell her he wants more toys.  When I ask him to tell me which toys he wants, he answers "EVERYTHING".  Oh, brother... what have we created :)

And, my favorite moment of all today came when Lou asked Ty for a kiss goodnight.  Ty has been so sick, he has been wiping off our kisses for days, but this evening he lifted his arms and pulled Daddy in close for a big huge hug and kiss.  I am so blessed and lucky to have the best boys in the world in my life.

Friday, October 22, 2010

Patiently waiting for improvement

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 nice to get home, but if we are going to be stuck at a hospital this is a good place to be.  I realized today that I have slept next to Ty in a hospital bed almost every night since August 8th, with the exception of a few short stretches back at home.  It's beginning to take a toll, but as long as he's here I wouldn't want to be anywhere else.

Thursday, October 21, 2010

Sleeping it off - part 2

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!

Wednesday, October 20, 2010

Sleeping it off

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 surgical resection.  We hope and pray we do not have to rush into another surgery, but we will cross that bridge when we come to it.  In the meantime please keep praying for Ty, and pray that the chemo is working.

Up in the country, baby Gavin is learning to fend for himself.  He gets around town on his own now, check out his new wheels.  He is just too cute - and he's getting so big!

Tuesday, October 19, 2010

Be bold. Be bald.

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 head-to-toe cultures and having any new hardware removed (such as the mediport that was placed just last week).  When I hear a doctor suggest that his mediport or his shunt might be infected I cringe because I just know in my gut that his fevers are a result of the pressure on his brain stem because he has suffered night-time fevers and night-time sweats long before we ever knew he had cancer and long before these foreign objects were placed.  For now, they are going to wait and see while maintaining a full spectrum of antibiotic treatments.  That's fine with me. 

We miss Gavin terribly.  He is being spoiled and having fun, but it's sad that Ty and Gavin are separated so frequently.  Here he is at Aunt Debi's house, enjoying not one, but two ice pops :)   Maybe we can all go home later this week.

Monday, October 18, 2010

A ray of hope

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 mass and causing growth/pressure, and that blood would be indicative of tumor destruction rather than tumor growth. I can't even describe how I felt when I heard the word DESTRUCTION.  It also felt amazing to hear that the pressence of blood may be a sign that the tumor is dying.  It was music to my ears. 

While I am so grateful for this new found hope, I am not yet relieved.  Yes, I am breathing a bit easier today, but I have yet to let out a real sigh.  That will come when Ty shows clinical signs of improvement.  Right now the pressure from the cranial bleed is causing the poor baby so much pain and nausea and it hurts Lou and I a thousand times more to see him like this.  It should be our pain, not his. 

His speech may be comprimised by the tumor, but his cuteness sure isn't :)  Enjoy!




Sunday, October 17, 2010

Sometimes, things get worse before they get better

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.  Oftentimes, things get worse before they get better.  

The doctors did, however, add steroids to his regimen.  The last time he was on this medication he improved significantly, and we are hoping for the same results this time around.  He may very well wake up tomorrow and show huge improvements just like the last time.  After a couple of days he was talking up a storm and eating everything under the sun.  That will be a wonderful sight, and I look forward to reporting some better news tomorrow.  And, if we don't see an immediate change as a result of the steroids, we still have to pray for a gradual improvement as the chemo kicks in.  We just need to be patient.

For those who have been following Ty's case since his initial surgery, you know his is a very complicated one and he has experienced a multitude of setbacks.  Most days I can accept the situation and get through the day by going through the motions in my new position as a cancer mom, but today wasn't one of those days.  Today I wanted to be curled up in bed with my own mom stroking my hair and telling me it's going to be okay.  Today I wanted to throw and punch things.  I wanted to yell and curse at the top of my lungs.  Then, just a few minutes ago, Ty woke up from a nap looking good, he asked me to lay with him, he wrapped his arms around my neck and said "I wub you" loud and clear.  Everything feels better now :)

Friday, October 15, 2010

Killing time at MSKCC

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 to everyone who has been sending him thoughts and prayers.  More tomorrow...

Thursday, October 14, 2010

Back in the hospital

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 build up. 

During the car ride in, I started to get sad watching him eat his buttered roll because I thought about how much normal, fun kid stuff he is missing out on.  Whenever that happens, I have to remember that none of this will matter, as long as one day he is graduating college/walking down the aisle/living life, who cares if he falls behind on his abc's or gets left back a year at school.  What difference does it make, really. 

I wasn't able to post yesterday because I spent the last 24 hours laying nose to nose with Ty.  I stare at him while he sleeps for hours. I caress his head and I curse the cancer under my breath while silently praying/begging for him to get better.  Today I was reminded of something my mom told me when I was in high school.  She used to work at a doctor's office and I remember vividly this one day she shared with me.  She had to change the dressing on a young man with very serious melanoma.  She said he was so young (early 20s) and she was so moved by his situation that she began to cry while she was working on him and  that, as silly as it sounds, she was silently praying with all of her strength for God to allow her hands to heal him while she changed his dressing.  I don't think she knows whatever happened to that patient, and I like to think that maybe she did have healing hands.  Maybe I do, too. 

Tuesday, October 12, 2010

Ty the Trooper

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 enjoy the outdoors as much as possible before it gets too cold outside.  I feel bad that Ty will be in therapy during cold and flu season because we are going to have to keep him indoors for the most part and that can make anyone a little crazy.  I'll have to come up with lots of fun crafts and new games to keep him busy :)

Monday, October 11, 2010

Cancer sux

Ty had a great checkup at the clinic today, his numbers are still looking really good - but he's just not feeling good tonight.  Headaches, nausea... this face kinda says it all.  We're going to call it a day.  More tomorrow.

Sunday, October 10, 2010

Fall fun in Long Beach

Ty had a decent night last night, and he was feeling good today.  He kept saying it was a beautiful day outside, so we decided to take him to the fall festival here in Long Beach, he has loved this event since he was one year old.  He was so excited.

Armed with lots of hand sanitizer, we stopped by to meet up with his girlfriend Eva and her brother Theo and off we went.  Ty was able to ride on the Carousel, pick some pumpkins and he got special treatment when he rode on the fire truck - they let him sit right up front!!  He was thrilled. 



Unfortunately, all that fun really wiped him out.  He fell fast asleep when we got home.  He ended up running a fever and sleeping for over 3 hours.  No worries, his fever broke and now he feels as good as new, he is on his second bowl of noodles for dinner :)  We knew this would be the last time we would be able to do something like this with Ty for a long time, so we are happy we had the chance to make these memories.  Tomorrow we pick up GaGa from Grandma's after our appointment at MSKCC, and we can't wait to be home with both boys.  Ty misses his brother.

Saturday, October 9, 2010

Everybody loves Ty

We just walked in the door, home sweet home again.  Ty did so well in the hospital, he was relatively happy and in good spirits the majority of the time.  In fact, he really hammed it up with the doctors, the nurses and the other families on the floor.  This just shows that he is getting used to everything, and in a better state of mind for the long road ahead.  All good things.  And, of course, flashing that adorable smile left and right has awarded him lots and lots of pampering and special attention from the hospital staff.  He's a smart kid and he's learning the ropes on many levels :)

He spoke a lot about his brother this time around.  He would point out presents from the nursing staff that he wanted to put aside for "GaGa" and there was a of painting of an airplane on the hospital wall that he picked out to hang in Gavin's room at home (Gavin loves airplanes).  It was very sweet.  It amazes me to think that Ty was 18 months old when he was born -- he seemed like such a big boy at the time.  Gavin will be 18 months in a couple of weeks, and he is still my tiny little baby! 

Speaking of tiny little babies, Ty shared a room with a 5-week old, Elijah, from Fargo, North Dakoda.  Elijah was born with a tumor behind his eye, but he is responding really well to his treatment (thank God) and his parent's were such great people.  I hate that there are so many other families going through this, but they also give us lots of hope and inspiration. 

We are a little overwhelmed by the amount of medication we came home with.  Ty has a 24 hour feed of IV fluids that he can carry in a backpack, his IV antibiotics, anti-nausea meds, a daily injection that we have to give under the skin, all on top of his belly tube feeds with nutritionally sound formula, digestive aids and Tylenol as needed.  He is also on a highly restrictive diet (luckily he was such a picky eater to begin with, he won't miss too much).  It's a lot, but we don't mind doing it on our own if it means we can be home.  We are just happy to be back.  As for next steps, we have an appointment at the hospital on Monday and again on Thursday.  That's as much as we know because we can only take it one day at a time.

Friday, October 8, 2010

Go Chemo!

It has been 24 hours since we administered treatment, and Ty is doing well.  He got sick a couple of times earlier today and he seems to be sensitive to smell, but otherwise he's been a regular, happy kid.  The impression we get from the staff here is that we can expect the nausea to continue for a few more days, and then in a week or two his counts will go down (red cells, white cells and platelets) so he will pretty much feel like garbage during that time. 

We hope to be discharged tomorrow after his last infusion is complete around 3PM.  We will be back at least once a week to check-in, and of course, if he runs a fever or shows other signs of being sick we have to bring him back.  It's going to be very important that we keep him in isolation when his counts are low for that reason.  That will be interesting with Gavin, who adores Ty and wants to play with him (or, at least annoy him to no end). 

On Friday night the hospital volunteers bring around what is called the "junk cart" (which is essentially filled with all sorts of treats) and Ty loved it.  He is now settling down in bed with Daddy and watching a movie.  Fingers crossed that he falls asleep early and that he sleeps well through the night.  We are totally exhausted!  Goodnight :)

Thursday, October 7, 2010

A rough night followed by a peaceful day

Last night I wanted to scream outload and curse the world. Ty's headaches have started up again out of nowhere and he was up all night in severe pain.  I felt so useless. He would look at me like "Do something, Mommy! It hurts SO BAD!" and there's nothing I could do to comfort him. He's three years old, I still can't believe how many poor little children suffer from this disease.  Cancer is pure evil and right now I am happy we are being so aggressive with Ty's treatment.  I wish cancer had feelings so it could writhe in pain, thrashing and crying while the chemo shows no mercy.  I hate this disgusting disease. 

Luckily I saved my venting session for today.  If I posted on this blog last night it would have been filled with many more capital letters, exclamation points and expletives :) 

Lou and I are very happy with this hospital, they are taking such good care of Ty here.  Although it was postponed until later in the morning, his surgery was a great success.  He had a double-lumen mediport placed, and they did it so quickly my phone was ringing to come back to the hospital just as the waiter brought us our lunch.  Eat and run indeed! 

Chemo started at 4PM and so far he has been okay.  The first doses will finish infusing around midnight tonight, then he starts again tomorrow around 1PM.  The nurses prepared me for the fact that he may get very nauseous and sick overnight, but my fingers are crossed that he continues to tolerate it well. 

We had fun in the toy room tonight, he has been in a great mood and he's hamming it up for all of the nureses.  I caught him whispering to a toy ring that lights up, he must have found it on one of the shelves.  I leaned in to hear him and he was saying... "no more cancer, no more hospital," then he took took a deep breath and pretended to blow it out. 

Wednesday, October 6, 2010

A bonus day at home with Ty

The kid turns three and all of a sudden he starts saying the cutest things!  I love it.  It's so amazing to hear him talking up a storm, he's such a chatterbox these days.  Music to my ears, especially considering just 5 weeks ago I feared that he would never be able to talk normally, or eat solid food.  The pressure from the tumor on his cranial nerves had caused his speech and eating abilities to spiral downward, and now he seems to get better and better with each passing day.  Today he ate chicken nuggets, french fries, pizza, pretzels, cheerios, animal crackers and ring pops and he is going to the bathroom on the potty again.  Thank you, God. 

So happy we had this extra day at home.  It was beautiful outside today.  We were up really early so we decided to walk to the diner so I could get some coffee, and then Ty suggested we go to the beach.  Naturally, we had to bring ALL of his beach toys (which consists of about 15 different shovels and 20 different pails), his new Spiderman kite, his scooter (?), his Spiderman sprinkler (??) and his remote control cars (???).  Of course, the scooter, sprinkler and remote control cars stayed in the wagon, but he had piece of mind knowing they were there :)

We are leaving for the hospital at 5AM, so wish us luck!  I can only pray that he handles the chemo well, but more importantly, that the chemo kicks this cancer's a**!!!

Tuesday, October 5, 2010

An update on treatment and a thousand more thanks

For the blankets you knitted, the cards you wrote, the prayers you said, the emails you sent and the gifts you left at the door.  For the birthday wishes, the charitable donations, the toys, the text messages, the phone calls.  For the hot meals, the on call babysitters and the endless supply of lollipops.  For the silent observers who read this blog.  For thinking of us and sending positive thoughts our way, we can't thank you enough.

Although Ty was scheduled to begin treatment today, it has been delayed until Thursday.  No worries, though, it's okay.  He went into the hospital today and he was cleared for treatment, but we were presented with an option to have surgery on Thursday morning that would involve replacing his temporary central IV line with a mediport under the skin.  We were originally scheduled for this procedure later this month, but the oncology team feels it is better to have the mediport in place first, and since there was a scheduling cancellation for Thursday, we agreed to take advantage.  Now Ty will have surgery Thursday morning, and as long as everything goes well (which it will) he begins his chemo immediately afterward.  We will be discharged either Saturday night or Sunday depending on how he's doing. 

In the meantime, Gavin has already set up shop at Aunt Theresa's and he is doing just fine.  What a smartypants.

Monday, October 4, 2010

Thank you

Ty had a wonderful birthday today.  I can't believe he's THREE!  Thank you so much to all of his supporters.  He was totally surprised by the number of people calling and the surprise gifts he received.  And we were even more surprised by the amazing generosity of our neighbors who stopped by the bake sale during Irish Day here in Long Beach.  Wow!  Ty is a very lucky little boy to be so loved by all, and to have so many wonderful people following him on this journey.  We are so incredibly grateful.

We celebrated tonight by sending Gavin off to Grandma's house so Ty could enjoy a trip to Nathan's for a dinner that consisted of nothing more than a french fries and fruit punch, followed by a friendly game of whack-a-mole, Sega Outrun, Shooting Gallery and "The Claw" that isn't strong enough to hold onto even the smallest stuffed animal.  Ty loved every minute of it.  He is still awake trying to bargain with us for one more show before bedtime.  Doesn't he realize that we need to be on the road at 6AM tomorrow?  Oh boy. 

On the car ride home from Nathan's he was being really quiet in the back seat so we asked him if knew how old he was, and he said "FOUR".  What?  How old are you?  "FOUR!" he said again. Then I realized he was totally kidding, how cute!  I smiled big and asked him teasingly... "how old are you?" and he gave me the biggest, cutest giggle and said "I'm Tree!"  I could just eat him up. 

After our last trip to Sloan Kettering, I was beginning to feel very sad about what lies ahead for Ty.  But, after having so much fun over these few days I have turned my attitude around and I am excited about starting treatment.  I can't wait to get started so I can stop worrying about what might happen if we waited too long.  In the toy room at the hospital there is a board where the children recently posted their wishes.  I want every single one of those beautiful wishes to come true.

- Clean MRI scans for eternity
- That no other child has to go through what I went through
- To meet any one of the Yankees
- A new house for my Mom
- To be cured

I envy their strength, their beauty, their innocence and their courage.  The mighty Ty will be in good company among all of these amazing children, and together they will fight. 

Sunday, October 3, 2010

A totally ordinary day

Cheerios and goldfish all over the floor.  Piles of laundry. Ty and Gavin fighting over a baby toy that neither of them ever showed any interest in before, and never will again.  Potato chips and upside down sippy cups shoved in between the couch cushions.  Max and Ruby DVD on replay.  Ty telling me he has to go potty after he shows me the puddle on our carpet.  Yup!  A totally normal day at the Campbell house.  And for that, we are grateful (and completely frazzled, but that's nothing new). 

The only news to report is that Ty's recent PET and CT scans didn't show any changes to the residual disease at the base of his skull, and there doesn't appear to be any additional disease anywhere, thank God.  We are very eager to begin treatment on Tuesday and start kicking butt. 

Saturday, October 2, 2010

A great day

Last night was a much needed birthday celebration among my closest friends. Lou set it up so that Caryn, Dawn and James, Keri and Mike all surprised me at the restaurant.  I never would have planned that for myself because I would have been too hesitant to leave Ty like that, but it was the perfect way to bring me back to a more positive state of mind at a time when I was starting to feel kinda down.  We went out to dinner and I had such a great time.  Mr. Martini?... why hello, old friend!  Wine with dinner?... Yes, please! 

Ty had a wonderful birthday celebration.  It's very convenient that there was a parade in Long Beach.  He thought it was all for him :)  It helped even more when there was a bake sale for childhood cancer and they had a big, adorable picture of Ty on display.  He was so thrilled when he saw that.  Thanks to all of this supporters in Long Beach.  It was so nice to see our friends and neighbors, it's been too long!

His birthday party at Grandma's house was so much fun.  All of his cousins were there and he loved seeing them.  We decorated pumpkins…


We destroyed the "Dora the Explorer" piƱata… (as an parent that is subjected to Nick Jr all day/all night, there's something especially gratifying about this photo).
 
We had Max and Ruby cake, as promised…
 
And, we saw SpiderMan (aka, cousin Richie - Ty was totally duped!). 
It was a great day for a great kid and he got some awesome presents.  His Harley Davidson scooter and Lightening McQueen car kinda scared Ty, though, so baby GaGa was more than happy to take them for a spin around town instead.
 
Thanks again to everyone who is following Ty on his fight for a cure.  We are so grateful for all of your prayers and positive energy. 

Friday, October 1, 2010

Birthday celebrations

Today is my birthday, and I was surprised with a visit by one of my best friends.  It couldn't have come at a better time, either, because it didn't feel like much of a birthday and I was having a very stressful, rainy, dreary day.  I went out to run and errand with Ty and my sister in-law, Debi, and when I returned Caryn was here at my house!  Caryn drove up from Virginia to spend the evening with me, and I couldn't be happier.  We are going to go out to dinner while my wonderful mother in-law and sister in-law watch the boys.

Tomorrow we are going to celebrate Ty's birthday at Grandma's house.  But first, we will be watching the Irish Day parade here in Long Beach with our friends and neighbors, and we will be going to the childhood cancer cookie sale that will be held in front of the Saloon on the corner of Beech Street and Indiana.  A sweet friend of mine from High School, Erin, had bracelets made on behalf of Ty and we hope anyone in Long Beach can stop by to support the cause.  Thank you!

At Grandma's house we are also celebrating Uncle Harry's birthday and cousin Kayla's birthday.  Then, on Monday, we will be sure to have yet another cake for Ty for his real birthday.  That will be very hard for me.  He is going to have his first chemotherapy treatment on Tuesday, and I just can't imagine how it is going to feel celebrating his third birthday just the day before.  Three is the cutest age, and it's supposed to be happy.  It's going to be really hard.