Showing posts from May, 2011

Delayed postings. God Bless Remy and Bernice.

The Campbell Family is suffering this weekend, but it has nothing to do with pediatric cancer for a change.  Cancer... on the other hand... we still hate you.  Cancer took the life of Bernice yesterday, a doting grandmother to my nephews and loving mom to my brother-in-law Harry and his sister Colleen.  She suffered with the disease for 18 months and showed amazing strength every step of the way.  My sister tells me that she often said, "what happened to me is okay, what happened to Ty... that's not!"  A few days ago she told my mother that when she gets to heaven her first order of business will be to make a special request for Ty's health :)  God bless Bernice, she was a beautiful woman and her family will miss her always. My cousin Pete and his wife Mary have been living in their own world of hospital hell over the past three months, and this morning they kissed their baby girl goodbye.  Mary gave birth to beautiful little Remy on Feb. 23 in an emergency C-sectio

If you're happy and you know it, clap your hands!

Ty slept fairly well last night, and I am so happy.   When I was in the kitchen this morning, I heard him out in the living room clapping his hands and singing "if you're happy and you know it, clap your hands."   He has no idea just how much meaning there is in the fact that he chose that song to sing… and that he is even singing at all.   It made me smile from ear to ear and shake my head in disbelief over how far we've come.   These are the moments I want to live in.     Ty had a pretty rough afternoon, I wouldn't be surprised if we find that his counts have started going down when we go for our clinic appointment tomorrow (white blood cell, red blood cell, platelets, etc.).   It's fine, his counts are expected to go down in order for the chemo to be doing its job.   It's just too bad that it makes him feel so crappy all around.   Despite his bad mood and fatigue this afternoon, he didn't require pain or nausea medication all day and that is such

Post #203 -- I can't believe it!

When I began this blog, I never imagined it would spread beyond my family and close friends.  I didn't know so many people would care to read my raw, emotional ramblings about having a three-year old with cancer.  I also didn't know how much I would gain from sharing this journey with you.  You all keep me sane :)  So, when I noticed tonight that I surpassed 200 posts - Wow! - Thank you all for inspiring me to keep this up.  I don't know how I would get through all of these twists and turns without an outlet and an audience!  It means so much to me and my family knowing that we have so many people in our corner, praying for Ty.  203 posts is also a blunt reminder of just how long we have been in this fight.  And, it's a reminder that there may be another 200+ posts in my future until I can announce that Ty is cured, but you all know I don't care.  It can take another 2,000 posts as long as my baby is okay along the way, and cured in the end.  This picture was ta

The good, the bad and the ugly

THE GOOD As I've said over and over again, Ty's journey brings out the absolute best in people.  If I were to make a list of the random acts of kindness that have been extended to our family, it would take up pages upon pages upon pages. Saturday night was certainly no exception.  Lou grew up in Mahopac, NY, and a bunch of his high school friends hosted an amazing benefit to support the Mahopac "Relay for Life" in Ty's honor.  I never thought we could pull it off, but Lou and I were able to attend thanks to his wonderful parents who bent over backwards to entertain our demanding little boy while we were out.  As you all know, Ty likes to "party all night," and that night was no exception.  I don't care that Ty was up until 1AM, it was worth it for Lou and I to get out for a few hours and socialize.  Thank you so much to all who attended the event at Red Mills Pub, with a special thanks to Jackie, Sally and all of the others who helped make it such

Sleep deprived

I haven't posted only because I have been utterly exhausted and running around like crazy.  Ty is fine, and we are all home!  We just haven't slept much for days on end and it's been brutal.  Ty was totally mixed up in the hospital because of the anesthesia, chemo and surgery.  He slept so much during the day that he was up all night.  He still isn't sleeping much at night since we got home on Thursday, only difference is that now he's not sleeping during the day, either, making for a very cranky family all around.  At the hospital on Thursday, we had a nurse practitioner on the floor who knows us very well.  She asked us why we weren't going home, and we told her that the TPN (nutrition) team wants us to stay until Friday to make sure Ty's electrolytes and potassium remains stable as they taper down the IV feeds - otherwise he could be at risk for hypoglycemia.  She asked us if we had a local resource we could use for bloodwork and we both sat straigher i

Beautiful Boy

I don't have much to say tonight, but I did have this beautiful picture to share that Lou took this morning.  This song has been playing in my head all day today.  I always loved it, and when I learn how to edit a video I am going to cut my own video of Ty to this music.  In the meantime, I'll share one featuring darling, darling, darling John.  Beautiful Boy - John Lennon Close your eyes, Have no fear, The monsters gone, He's on the run and your daddy's here, Beautiful, beautiful, beautiful, Beautiful Boy, Before you go to sleep, Say a little prayer, Every day in every way, It's getting better and better, Beautiful, beautiful, beautiful, Beautiful Boy, Out on the ocean sailing away, I can hardly wait, To see you to come of age, But I guess we'll both, Just have to be patient, 'Cause it's a long way to go, A hard row to hoe, Yes it's a long way to go, But in the meantime, Before you cross the street, Take my hand, Life

Don't look back

Tonight I shared my shower with just a small, harmless insect and it reminded me of my daily experience in my college dorm.  It was tolerable.  I turned up the heat and allowed myself to think.  I thought about all that Ty has missed over the last nine months.  How shocked I am to this day that my perfectly healthy baby boy is now so physically weak and underweight.  How sad I am when I look at his "life before cancer pictures" because he can never be that baby again.  He can never get that time back and he will never get to be an active three-year old.  I feel so robbed.  Even worse, HE has been robbed.  Robbed of so much fun and laughter.  Before cancer, I was happily living in a world of simple blessings.  It was a perfectly fine life and I want it back more than anything... but there are some things that this experience has given me that I am actually grateful for.  Especially the intensity of my own feelings.  I hadn't known the depths of my love, because they had

You talkin' to me??

This picture says it all.  Although it was taken back in October before he lost his hair, this is pretty much the attitude Ty's been sporting the past couple of days.  "You talkin' to me?" The little fighter is in a baaaad mood!  I am chalking it up to his fighting spirit and the fact that he was up all night last night.  I think he just wants to get busted outta here.  When he's not complaining, he's quiet and staring off at the ceiling, which worries me because he seems so sad and lost.  The hospital really takes a toll on him.  Luckily, we expect to go home Wednesday or Thursday.  His surgery to place a new shunt is scheduled for tomorrow (there is a big case on the schedule before him, so he probably won't go in until late afternoon), then the doctors will want to monitor him for a minimum of 24 hours before letting us go home.  Last night, Ty tortured us. He slept off the chemo for the majority of the day on Sunday, so he was just restless.  I wa

Keeping it together

Ty has been sleeping it off all day.  He gets head pain, he throws up, he falls back to sleep.  It's good, I prefer him sleeping peacefully rather than awake and irritated.  I, on the other hand, am going stir crazy.  I drank way too much coffee, I've been sneaking handfuls of sugary garbage from Ty's "treat bag" throughout the day, and there is absolutely nothing on TV to hold my attention.  How many times can I check Facebook in an hour for no reason?  Bored is an understatement.  Lou came this afternoon and I was so excited to do some laundry and take a shower.  It's a community shower here at the hospital and I had the unfortunate luck of sharing my shower with someone else's booger.  That's right... there was a pretty big booger stuck to the shower curtain.  Instead of the long, hot relaxing shower I craved, I was haunted with visions of accidentally brushing up against the curtain the whole time and   I couldn't get out of there fast enou

Cisplatin - Let's see what you've got

All things considered, we had a great day.  My sister spent the day with us and Ty had his ups and downs throughout, but the ups were so cute and so sweet it made it a lot easier to tolerate his downward mood swings.  He is still talking about "Aunt T" as he is falling asleep next to me.  She taught him about these little toys called "gogos" and apparently he is obsessed.  It doesn't take much to get him excited, all you have to do is mention the T-O-Y word.  Typical three-year-old. We are back on morphine and anti-nausea meds around the clock.  The chemotherapy used this time around is different from the doxorubicin/vincristine/cyclophosphamide that Ty was given back in October and November.  It is called Cisplatin and it is known to be affective in similar types of cancer. Our poor little guy is such a trooper.  Ty has kept his spirits high, despite being in the hospital.  He cries when he is in pain, but he is otherwise tolerating the chemo pretty well so f

"I don't want go hop-widdle!"

Ty is so smart.  He hears me say that I'm putting bags in the car or he hears me say something about his doctors and he immediately whines "I don't want go hop-widdle!"  I've been pretty successful at distracting him every time this happened today, but I know that he knows.  The new plan, as we were informed by his doctors just yesterday, is to replace his shunt simultaneously during chemotherapy treatment.  The team felt an infection could be catastrophic so they suggested we take the most conservative route to avoid that at all costs. We will be leaving at 4:30AM for a 6AM check-in at the hospital.  An OR is booked first thing in the morning at Memorial Sloan Kettering, where his neurosurgeon will remove the VP shunt that we suspect may be infected, and place an external drain in his ventricles.  That means he will have a tube that is outside on top of his head for several days in order to allow for any lingering bacteria to be completely cleared in the CSF be

Fear, doubt and anger

Despite the fact that Ty had another amazing, pain-free day (two in a row!!)... I have been carrying a huge weight around all day.  I can't seem to shake it.  Every time Ty says something sweet (like when he told me I look "pwitty" today) my eyes well up with tears.  I am so afraid that I won't have good days like this for such a long time once we check into the hospital on Thursday.  It took so much pain and suffering for him to get here, for him to finally feel better.  I can't help but have my doubts about whether or not we are doing the right thing.  I can't help but fear the biggest fear of all.  I can't help but get angry over last week's results.  He has come so far, we were supposed to be approaching an end to all of this.  Instead, this feels endless. As I've always said, I will happily do this for years upon years as long as Ty is cured of his cancer, but what about him?  How many more hospital stays can a 3-year old handle before his m

Beyond bittersweet

Is there a word that means "bittersweet" times a thousand??  Everything about today was beyond bittersweet because Ty had the best day in months upon months, yet we have to kick him right back down by starting up chemo again later this week.  Just look at my little supermodel up there.  He was wide eyed and happy all day.  He looks a little melancholy above, but he is actually just posing for the camera :)  Today was the first day since I can remember that he didn't require ANY pain or nausea meds.  On Saturday we took him off his steroids completely, and he is getting stronger in his arms and legs as a result (the withdrawal made him sick all weekend, but today he was feeling terrific and didn't throw up at all).  He has some minor pain in his arms and legs, but I welcome it because it means his muscles are being put to work.  Now we just need to build up his appetite.  I can't help but watch him getting better and think, how can he still have cancer??? How

My mom. My hero.

My mom is amazing.  Not only is she suffering watching her grandchild go through all of this pain, but she suffers knowing how much I am hurting.  Still, she remains positive, she takes my calls at all hours of the day and she is the best listener in the world.  She never wavers.  She is beautiful, loving, generous, gentle and tireless.  I want to be just like her.  I don't know how she does it and I never did. Today we had a nice quiet day at Grandma's house, and as always, my mom took care of all of us.  Feeding us delicious meals all day, watching out for great Granny (her own mother, 90, who lives with her), cleaning up after us and bending over backwards to keep Ty smiling.  My Dad is great, too.  He constantly tries to keep Ty and Gavin entertained.  It was a good day.  Lou and I took Gavin and Ty for a long walk around the neighborhood I grew up in and it was just nice and easygoing. There has been an underlying sadness lurking around me all weekend.  Lou and I have

No miracle today. Maybe tomorrow.

Ty's MRI showed that the two new lesions that appeared in his cerebellum two weeks ago are, in fact, tumors.   And, they are growing.   It isn't the news we were praying for, but by no means should anyone lose hope.   Our doctors are still confident that there are good treatment options available, and so are we. Of course, my heart is heavy, my jaw is clenched and my head is throbbing because of all the times I've held my breath and my tears today.   Lou says that we shouldn't be so surprised.   That maybe we set ourselves up for disappointment by hoping they would go away like the time the "lesions" in his spine did.   I know his point is valid, but I was just so positive and so confident I thought somehow my attitude and my certainty would make it true.   And, in the end maybe it will.   Ty can still beat this, and I am not the only one who thinks so.   When Ty had his MRI of the spine last week it lasted over an hour and I stayed in the room with him the

Brain scan today. Ty is so brave.

We are here at the hospital, waiting for Ty's next MRI of the brain.  I haven't been able to post this week because my laptop broke down on me.  Hopefully I will have it up and running again soon.  In the meantime, I will try to post a brief update from my phone or something later today.  We expect to be here late into the afternoon, and we should have some news by early this evening. Ty is so brave. He is excited to have his "picture taken" without any anesthesia again.  He promises to hold still, "like they say on Yo Gabba Gabba," he says with a smile. Obviously, we are praying, praying, praying for good news.  My husband put it simply this morning.  Either the scan is going to show that his cancer is getting worse, getting better, or staying the same for now.  Please God, may it look better and continue to improve.  Thank you all for thinking of us today, and for your extra prayers during such a stressful time.  My anxiety level is at its peak.  I fee


I had a detailed post written and ready to post, and then I saw the news this morning…   It seems silly to share all the smaller trials and tribulations from an otherwise average weekend amongst such incredible news, so here's just a brief update.   Ty had a good weekend.   Despite only a few episodes of nausea, Ty is really getting back to himself lately.   He wants to play all the time.   He interacts with his shows on TV and lately he started singing again, which might be the cutest thing ever.   On Friday night, one of my best friends drove a couple of hours to spend the night and help out, even while she is pregnant with twins.   As much as I love the help, I love the company from my friends even more.   I forget how desperately I need that!   Then on Saturday, another one of my best friends came out and did the same thing for me.   Thank you, Lou, for taking the kids out with you for the day.   That time sunning out back with Christina and talking about love and loss and 9/11