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Showing posts from June, 2011

A simple procedure, just like we were hoping for

In fact, it turned out to be an even easier surgery than we expected this morning. Ty slept well last night, despite the fact that they woke us up every hour on the hour to shine a light in his eyes and take his blood pressure. He woke up surprisingly cheery. His eyes were still terribly crossed, but he was so cute with his doctor. when he was leaving the room today Ty said, "Hey Doc! See ya way-ta.". In fact, he was in such good spirits while being rolled off to the OR, he didn't even require any anti-anxiety meeds in advance. He just kissed Lou and I goodbye with a smile while our hearts were in our stomachs. Ty returned two hours later without a new shunt. That's right. When they opened him up in his belly to check the tubing, whatever debris had collected inside cleared itself and it began flowing perfectly. To be on the safe side, they also opened him up on top of his head to check the function of the valve and it was working perfect. The neurosurgeon

The Shunt. Again.

"Arent you glad it's the shunt and not tumor related?" joked the neurosurgeon. Of course, but come on already!!!! The MRI following Ty's surgery last week showed that his ventricles were larger - an indication of hydrocephalus that we are all too familiar with. We were told that it was most likely caused by debris from surgery interrupting the CSF flow. Our doc pushed hard on the shunt valve to flush the tubing several times and that seemed to do the trick. Unfortunately, i guess it was a temporary fix. Yesterday Ty's eyes began to deviate toward the middle. By this morning he was completely cross eyed and keeping his eyes closed most of the time for comfort. We made our way to the hospital and it turns out that "cranial nerve six bilateral palsy" is a very common indicator of increased intracranial pressure and shunt malfunction. Ty just never experienced it before so we had no idea what was going on. None of Ty's doctors are worried, th

We're having our ups and downs

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I should be in bed.  These steroids are just so awful.  Poor Ty was so miserable all day today.  Not at all due to pain or nausea so no worries - (phew!) - but OMG his mood !  I think I mentioned a long time ago that he used to call the steroids his "angry medicine" when he was on a regular dose of three milligrams a day back in December/January.  He used to yell as I was coming with the bottle "please don't give me the angry medicine!"  Today we just weened him from 12 milligrams a day to eight milligrams.  So, you can imagine what this is doing to him.  On the bright side, he has a ferocious appetite. He ate 11 slices of bacon, four slices of turkey, almost a dozen lollipops, three cups of blueberries, chippies (potato chips), animal crackers and pretzels.  I'm excited about that.  Last night Ty only slept about four hours in total.  He was up at 6AM and didn't even nap once all day.  He was so tired he was actually closing his eyes while he was eati

I love you more

Ty has been SO SWEET!  He told me "I wub you" about 100 times yesterday, and I'm not exagerrating.  He must be feeling a little vulnerable because he's been so mushy, and I am just loving every second of it.  What a gift yesterday was, and this morning too!  He just puts his arms out to hug me all day long, and I'm getting non-stop kisses.  Literally, hundreds of kisses.  Never in his life have I seen him so mushy.  It is the sweetest thing in the world.  He is smothering Lou, too, and even Gavin.  Every time he tells me he loves me, I answer "I love you more".  Sometimes he says "No, I wub YOU more," and I answer "I love you the most!"  He sat outside in a lounge chair for almost 1/2 hour yesterday, which was the most he has ever allowed me to be outside in the yard.  He is apprehensive about that because he is physically limited, but he is getting stronger and taking baby steps toward getting out more.  Lou and I also took him for

Thinking of you

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On Monday, a very special girl will finally be leaving the Pediatric ICU at Weill Cornell NYP, after what I think was more than six weeks this time around.  We were lucky enough to share a room with her following both of Ty's major surgeries, and she and her family are simply beautiful.  Kyra.  A beautiful name for a beautiful young girl.  I fully respect her privacy and there's really no need to share details, but I can't help but think of her often because I keep hearing her voice.  The last time we shared a room, she was also recovering from a major surgery and remained intubated until just before we were discharged so I don't recall hearing her voice at all.  This time around, she was talking up a storm about Justin Bieber to some of the others at the hospital and she sounded so adorable.  Pure sweetness.  I got to see her sitting up with her hair pulled back and I wish I told her how beautiful I think she is.  Life is so f-ing unfair, and like so many of these ki

A bit distressed

Discharge was a circus today. We didn't actually walk through the door at home until around 8:30PM and I immediately had to get Ty's meds ready. Then I had to clean out the refrigerator of all the rotting groceries that I purchased over a week ago but never got to eat - so sad!  One of my least favorite parts about returning home after a long stretch.  Ty was very excited to get home, but it was so late and he was soo tired, he actually asked if he could just go straight to bed.  Within the last three or four hours he's been doing some strange neurological things, too, which has Lou and I feeling like our eyes are being held open with springs.  It's just so nerve racking to see him with tics like yawning weird every 30 seconds, or opening his eyes wider than usual.  We need to keep reminding ourselves that the MRI was clean yesterday (clean is such a beautiful word) and that we need to allow his brain to recover.  Ty's brain is doing a lot of moving around and read

Much love to our nurses

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Ty has been so depressed today, and I really can't blame him.   I think it's just a combination of the steroids, the withdrawal from the wealth of narcotics he was on when he was intubated, the constant chaos in the Pediatric ICU and the fact that we are sharing a room with two older teenagers.   Both of whom are incredible kids, so brave, but when he is away from other little guys his age I think he begins to feel more of an outsider.   Plus they are up so late at night, it's really taking a toll on Ty.  He should be in a room with other little kids who are tired by 8PM.  This really drives me crazy!! The good news is… we are supposed to go home tomorrow.   In all of my experience, the minute we walk out the door of any hospital Ty's mood turns around.   It's a sure way to get a smile.   As are presents - and he received an amazing present at the hospital tonight.   It was so special and it was the only time all day I saw him perk up, even if only for a short whil

Seeing is Believing

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I wish I had my video camera with me, because you wouldn't otherwise believe how amazing Ty is doing today.   His MRI was performed this morning at around 9AM (everything is always late).   He was brought back to the room and easily extubated soon after.   The MRI showed that all of the visible cancer has been removed, and that he is recovering surprisingly well.   There is a sinus membrane where one of the tumors was arising from that is a concern because it is a sensitive area to work with.   The surgeon removed all of the visible cancer by scraping at the membrane, but he had to be cautious due to the chance of fatal bleeding.   He is concerned about an aggressive recurrence in that area, so we are exploring our options with focal radiation at Sloan Kettering.   We feel there is a benefit knowing that the new chemo (the Temodar) is also at work… swimming away in this body… so I like to visualize that killing any microscopic disease left over or at least keeping it at bay until

Success

Ty's surgery today was a success.  It was long, but his surgeon said he thinks he was able to remove both tumors in entirety.  He remains intubated tonight, but only because he is scheduled for an MRI at 7:30 tomorrow morning.  He will be extubated immediately following that, and we can't wait to see him bounce back.  In the meantime, I am going to stay at the Ronald McDonald house tonight since I can't get into bed with him and he is going to be sedated throughout the night.  Lou is camping out on the makeshift bed in the PICU just to be here in case something should happen overnight.  I don't have the energy to get into the details tonight, but I will be sure to post more information tomorrow.  All of our love... Ty and the rest of the Campbell family.

Pre-surgery stress

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I can't even believe we are here again.   Awaiting Ty's third major tumor resection.   If it wasn't all in his brain, maybe it wouldn't be so scary, but really… how many times can we choose to open up my poor baby boy's skull?   This has been such a difficult decision and we are completely terrified, but we are also so hopeful.   Before going to sleep on the eve of surgery, my mind is absolutely racing.   But my thoughts are so intense and so scattered that I can't even organize them in order to put them down on cyber-paper.   Instead, I can some of our most intense feelings in simple terms...   Lou and I are more scared of Ty losing his speech, motor skills or other brain damage than we are of losing our precious baby in surgery. The whole reason why we opted to do this is to make things better for him and we fear the regrets we will face if it doesn't go well.   As a result, our anxiety level is at an all-time high, and we are having a hard time keeping

Next steps for Ty and a tribute to Lou on Father's Day

Update on Ty - our little fighter We decided to opt for another major surgery.  Some of the doctors here think we are crazy, but our neurosurgeon is the most vested in Ty and he said he wants to do it.  If it was his child, he would do it.  What more can we ask for than that.  The others don't think we're crazy because of the surgery risks - this time it actually won't be as dangerous and heroic as last time.  It's just that when a cancer like Ty's metastasizes, there isn't an oncologist in this hospital who will tell us it can be cured.  Point being, if we subject Ty to this surgery, we can only expect for another tumor to appear either at this tumor site or a new one.  Lou and I understand that yes, the chances for a cure are slim to none.  Like getting hit by lighting.  But you know what?  People do get hit by lightening. It happens.  And if there is a way that we can stay in this fight without hurting Ty much more than he is already suffering, then we are

Keep fighting

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Can we?  My childhood friend who I love with all my heart recently drove 6 hours with her toddler to visit with me.  She and her husband are simply the best.  She gave me a bracelet that is engraved "Keep Fighting."  I cried when I opened it because it reminded me that this is my fight too.  And Lou's fight.  We are making so many difficult decisions for Ty including whether or not we should give up.  I caught a glimmer of the inscription today while I was feeling very vulnerable and it helped me.  Keep fighting.  I hope we can. We will be meeting with Ty's neurosurgeon tomorrow at 9AM to find out what, if any, our options are.  He reviewed Ty's MRI results and told us that he believes that what appears in his Cerebellum is mostly tumor mass, with some bleeding captured inside.  The Cisplatin simply didn't work.  It's so hard to believe, too, because Ty's best weeks in 6 months were while he was on that medicine.  I guess it just didn't knock him

I am in hell

We left for the hospital shortly after my last post.  Ty's breathing was becoming so labored and he was so congested that we got very worried.  I didn't want to spend another night wondering if he needed to go to the ER, so we left around 5PM with the hopes that he could receive a chest x-ray and some medications and we could return home tonight. During the car ride, I squished myself between the two car seats so I could be closer to Ty.  He was so uncomfortable he kept asking me to snuggle him in his scraggly, fading voice.  I would try to get myself in the most awkward, twisted position to snuggle him but it just didn't help.  He got worse and worse as we were driving into the city, as did the traffic.  It took us twice as long as usual to get here.  There were severe thunderstorms and flooding on some of the roads, it was a disaster.  When we walked into Urgent Care at Sloan Kettering, Ty was completely pale and the skin under his eyes was very red.  The cheery nurse c

To go or not to go

Lou and I left the hospital today feeling very good.  My sister came into the city to spend the morning with us and Ty was actually sent off with a clean bill of health so quickly that we were able to enjoy a nice breakfast at one of our favorite places.  All of the neurological issues that had us so concerned didn't seem to scare Ty's doctors much.  In fact, his primary doctor raised a number of points about Ty's symptoms that show they are probably not even tumor related.  For example, Ty's weakness and lack of hand-eye coordination is bi-lateral (meaning, the weakness presents itself equally on both sides of his body).  The Cerebellum lesions are both on one side of the brain, and if the symptoms were related they would be present on only one side of his body.  After several neurological tests, we were also told that Ty isn't showing any signs of brain stem compression.  We knew that because we are sure that the radiation did the job and wiped out that cancer -

Don't panic

Lou and I are trying desperately to hold it together tonight.  Trying to be patient - not to panic.  Ty's speech is getting worse.  When he tries to clap his hands or bring a cup to his mouth, he can't do it.  His aim is off by a mile.  With the cup he not only misses his mouth, he misses his entire face.  Those are all tell-tale signs of problems within his Cerebellum, which is the part of the brain where his cancer has recently spread.  It affects coordination.  His doctor says that this it sounds like more than side effects from chemotherapy - that something neurological is going on.  What is making this even harder to accept is that I've been trying so hard to deny that the cancer even spread to that area.  I was sure that if I was positive enough, if I believed with enough certainty and if I prayed enough, that the next scan would show that there is no sign of cancer in his Cerebellum after all.  Obviously we are on our knees, begging.  We want so desperately for thi

Video Montage

This video includes a lot of photos you have probably seen over the course of the past 10 months.  Some may be a little difficult to look at, but I wanted to illlustrate the truth about all Ty has been through.  Thank you so much, Janine, for helping me do this!  I enjoyed reflecting on what has been a challenging journey to say the least. Sometimes it feels like years since this all began.  Ty has been sleeping it off quite a bit, but otherwise he's doing well.  We had a relatively quiet day on the couch watching Blue's Clues.  Go Chemo! Ty Louis Campbell - Here Comes the Sun

He will get through this

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I received great advice tonight.  I have to stop worrying about every small thing that Ty does.  I had a very emotional day because I am allowing too many negative thoughts into my head.  Just because his speech isn't great today, or because he's sleeping so much and a little more shaky, doesn't mean his cancer is spreading.  I just need to remind myself that this poor kid is three years old and just finished his fourth round of heavy duty chemotherapy after a rigorous six weeks of radiation therapy.  Of course he's tired.  I wouldn't be able to talk very well if I was pumped with all of those meds either.  And, all of those symptoms are listed as potential side effects to the chemo.  They also may indicate tumor destruction, which is what this is all about.  Ty is a special boy with an incredible spirit and he will get through this.  Thank you, all of you, for always reminding me of this.  You are all so positive, and that is helping our boy heal while it helps t

Hugs around the neck

Weeks ago, Lou was looking at a friend's photograph and mentioned how unfair it felt to see her son with his arms wrapped around her neck; the two of them sporting ear-to-ear smiles for the camera.  We just wanted to be able to hug Ty the same way.  He was so weak for so long, at the time we started to forget what a giant hug around the neck feels like. If you think about it, the neck is the best place for those little arms to reach around and give a genuine, love-filled squeeze.  When I would carry Ty around, I used to have to pull on his limp arms and prop them up on my shoulders until gravity would eventually carry them back down to his side.  It was so depressing.  I am telling you all of this only to help you understand how far he has come in such a short period of time.  Tonight I laid in bed with Ty as he held me around the neck, tighter than ever, and drifted off to sleep.  Slowly but surely, he is getting there. He gives the best hugs now, he is sitting up without suppor

Chemo - Round 4

My mom and I are sitting with Ty as his next cycle of chemo begins.  It involves a six hour infusion of Cisplatin that will remain in his system for 28 days.  We are also adding an oral chemo called Temodar (when I last posted about this I was mistaken when I thought it was going to be Etoposide).  The Temodar is intended to add a bit more punch to his regimen.  It will help Ty to beat up the cancer :)  Ty tolerated the last round of Cisplatin very well, with the exception of his loss of appetite and altered taste he was really feeling good.  I hope he will do just as well this time around, knowing that we can expect the worst reaction over the first 48 hours.  Today and tomorrow will be rough, but he should begin to feel better over the weekend.  As for the Temodar, the biggest side effect concern is constipation.  Certainly no big deal considering all that Ty has been through, otherwise.  He can certainly tolerate that, he is plenty experienced because that is also a huge side effe

Great day today

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I'm sitting here in Ty's corner on the couch.  I feel like if he walked in here right now I would get yelled at :)  It's as if I am in violation.  I can't help but think it, but with all the heartbreak I've experienced in the past couple of weeks, I can't stop my mind from having fleeting thoughts about what it would be like if this wasn't Ty's corner anymore.  I think I would want to get rid of this couch.  We would have to burn it.  I would never feel comfortable in this spot, just like I don't feel 100% comfortable sitting here right now.  But, it does help me feel so close to him to snuggle my butt into the same cozy spot where he rests his all day long :) We had a great day today.  Especially tonight.  Lou was home and we played together as a family for over an hour.  At one point I was running around chasing Gavin like crazy as we both screamed and threw ourselves on the floor over and over again.  Ty was loving it, and after a while he wante

Peace out, love Ty

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Before Ty was diagnosed, he used to do the cutest thing... He spent every day at Sissy's house while I was at work, and during that time Sissy's daughter Colleen taught him to say "Peace Out!"  The cutest part about it was that he could never hold out his fingers in a real peace sign; instead he would point with his index fingers on each hand and bring them both together in front of his face.  Today is the first time Ty learned to do something that is more advanced than what he was able to do before cancer.  He learned to hold out two fingers in a peace sign.  Actually, we were teaching him to hold out his fingers to show how old his brother is (Gavin is two) and when he realized what he was doing he said,. "Hey!  Peace OUT!"  I can barely express how proud I am.  He is doing so well.  On top of that, he ate a half square of cheese, 3/4 of a turkey roll-up, five potato chips and a mini ice pop.  That is more than he has eaten in weeks - no exaggeration. 

Sunday is a day of rest

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The Campbell's spent most of the day at home, doing nothing much of anything.  Well, we did attempt to make a pizza for the first time in our pizza oven... Obviously, we have a lot to learn :)  HAHAHA! This is not roadkill.  It is our first homemade pizza! The Pawling Triathalon and Relay for Life in Mahopac yesterday were both wonderful.  It was a very long day, though, so I'm glad we all took it easy today.  Ty's tri team was made up of Lou, his sister Debi, and two great friends since high school, Sally and Barbara.  It was the very first triatholon for Debi, Sally and Barbara and I am just so happy that our little guy inspired them all to conquer such an amazing feat!  On that note, a friend from Long Beach, Zev, also ran his very first marathon in Ty's honor a couple of months ago.  I posted about it at the time, but it's such an amazing accomplishment that I feel I need to mention it again.  Debi wearing the "Team Shirt" I had never been t

Fly Remy Fly

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The memorial service for baby Remy was beautiful and heartbreaking.  As Mary's sister said in her eulogy, my heart was warmed and shattered at the same time.  My cousin Pete also said a eulogy that was so touching with such clear perspective, I was simply blown away.  Talk about inspiring.  Ty came with us to both Bernice's services earlier this week, and Remy's today.  He gave Uncle Harry a huge hug and kiss when he saw how sad he was about his mom.  Of course, he didn't understand why, but he knew his Uncle was hurting.  Today he did the same for Pete and Mary.  He held out both arms and grabbed their faces in an effort to give them the biggest hug and kiss he is capable of. He was such a good boy, it's as if he could feel his two new angels perched on each shoulder.  Two beautiful souls, one old and one new. A friend of Pete and Mary sang this beautiful lullaby as we said our goodbyes to their baby girl.  It remember receiving this on a Baby Lullaby CD when T