Showing posts from October, 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!! 

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 heartra

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 t

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

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

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

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.

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 Tues

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 a

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!

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 no

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 ha

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

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.  O

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 thought

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.  Duri

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

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.

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

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 seeme

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 &qu

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

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 Sp

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 Thur

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

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. 

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 h

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