Sunday, May 29, 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-section when her doctors discovered she was suffering from HELP syndrome.  Over the past three months, Pete and Mary were thrown into parenthood and faced with more pain and difficult decisions than any parent should ever have to face.  They are and always will be the strongest, most loving Mommy and Daddy in the world.  My heart is broken wide open.  Pain is pouring out.  I just wish it weren't true, I am still in shock and disbelief.  Although Remy never quite turned that corner during her time in the NICU, I was just SO SURE that she would.  She had so many ups and downs, including some great, unforgettable days like when they were able to hold their baby for the first time ever after months of uncertainty.  Of all people, I know how badly they wanted her to get better.  I don't really have anything else to say.

Over the next few days we will be traveling and visiting with family and loved ones.  I don't know how often I will be able to post, but I will try to keep you updated on all things Ty.  Today he is doing great.  Sleep is still an issue, but he has been having relatively pain-free days for the three days in a row and it's been so incredible.  He is really feeling good.  His visit in the clinic on Friday showed that his bloodcounts are actually on their way back up, so he should be doing well for the next couple of weeks until we begin the next treatment.  I am so happy it went so smoothly this time around.  We will not know how affective the chemo has been for another six weeks or so (MRI won't be scheduled until after his second round of chemo is completed) but clinically he is showing small improvements with every day.  We are thrilled and so hopeful.  Ty has more angels watching out for him today, and he just has to be okay. 

Thursday, May 26, 2011

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 a tremendous relief to me.  I don't know what makes one day different from the next when it comes to that, but I am so grateful for the days when I am not trying to chase his pain and vomiting with medication.  It is such a horrible feeling being responsible for medicating him and feeling so useless when he continues to scream out in pain, or throw up the medication leaving me uncertain over whether or not to repeat the dose.  It is stressful and a lot to handle!  Those are my most difficult days. 

Tonight, around 7PM, Ty turned around again.  He had two hours of pure happiness that Lou and I just relished in.  He had about an hour while Gavin was still awake where he was laughing at his little brother and loving him.  Then we had an hour alone with happy Ty before he decided he was tired and ready for bed.  He was fully engaged and participated in all of his bedtime stories and prayers.  It was a very good night.  Of course, we all know that since he went to bed early we can expect him to be up any minute now.  I hope not, but I am pretty sure of it.  We've had only a few good nights in the last three weeks and there was never one after the other.  He likes to change it up.  Some nights he stays up super late where my eyes are bloodshot, but then he sleeps until morning.  Other nights he wants to go to bed at 8PM but the endless whining "I can't swee-eeep!" begins around midnight.    And, of course, there are the bad nights that are interrupted with head pain and vomiting.  That is when this whole sleep ordeal is most unfair to everyone.  My poor baby.

Yesterday we visited the most adorable preschool ever.  I can't wait for the day that Ty can go back to school and Gavin can start school so he can interact with other toddlers.  I am sad that Ty has become so shy around other children, but I think a lot of it has to do with how limited he is.  He feels insecure and I don't blame him.  He may be little, but he knows… He knows that everyone that sees him in public cocks their head to the side in sympathy.  When I carry him around he hears how everyone says "Awww, somebody looks tired," but it's really only because he can't hold his head up so he lies on my shoulder.  I don't mind at all, and I totally understand that people don’t know he is disabled or that he has cancer.  And, it's totally okay when they gasp upon noticing the radiation bald spots and the six inch Frankenstein scar from his craniotomy.  Really.  I expect people to gasp.  I expect people to feel sorry and not to know what to say.   It's sad and unfair and upsetting.  But I've noticed that children react with a special sweetness that is hard to explain.  I could tell you countless stories of how sweet the neighborhood kids have been, but I will just tell you about tonight for example.  Three small boys came to drop off a delicious dinner with their mom.  They were two, four and five.  The two year old boy also suffers from chronic health problems related to a heart condition and their mom really knows where I'm coming from, which was so nice!  Anyway, when they were heading out, one of the boys noticed a Mickey Mouse stuffed animal on the floor.  He stopped in his tracks and looked at Mickey.  Gavin's babysitter asked him, "do you like Mickey Mouse, you can hold him?" and instead, he nervously picked up the doll, brought it over to Ty and shyly placed it on his blanket.  How sweet!  Kids watch out for one another. 

Oh, and our little fighter is back in training.  SuperTy is getting ready for the ring!  I am uploading tonight's video from YouTube instead of attaching the file to see if more people are able to view it easily on their phones and i-pads and such.  Please let me know if the file links are better. 


XOXO, Love Ty and family

Tuesday, May 24, 2011

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 taken at the time of my very first post.  It's very blurry, but he still looks cute. 


Then this was taken in early April during one of our many trips home after a long hospital stay. You can see that the steroids were still giving him those chubby cheeks just a few weeks ago.  How much he's changed in these 200+ days!

Tonight, I am pleased to report that Ty is sleeping.  Yes, that's right, he is asleep in bed while Lou and I are sitting on the couch together after a long day.  I don't know what was different about today, but for some reason when I asked him if he would please come to bed with me tonight, he agreed.  Maybe he is getting more comfortable with being home, or maybe his bloodcount is starting to drop from the chemo so he is more fatigued, but regardless I jumped at the opportunity and climbed into bed with Ty before even changing out of my clothes.  We snuggled so close we were sharing breath.  He fell asleep after a while, and I was able to sneak back out for some rare alone time with Lou.  We are both so excited to be here, I think I will have to cut this post short so we can catch up.

UPDATE: I was mistaken.  Turns out lst night wasn't much different from any other.  Ty was so well rested after going to bed early last night, that he has been up for the day since around 2:30AM with only a few intermittent naps throughout the morning.  I am trying to drink my coffee (thank you LOU for letting me sleep while you tended to the Boss), and Ty keeps harassing me to play Hungry Hungry Hippos.  Really Ty?
Before I go, let me share with you my communication with Ty's doctor via email today.  I was over the moon and feeling the love after getting his positive feedback. 

Doc:  How is Ty doing at home?
Me:  He has some emotional issues, but physically he is doing okay.  His pain is managed better than before, as is his nausea.  I'm keeping him on a small G-tube feed as much as possible in order to keep his stomach from contracting while he is getting TPN.  His appetite is otherwise non-existent.
Doc:  Cindy, all of this sounds perfectly fine.  Sounds to me like Ty is doing amazing and I look forward to seeing you Friday. 

Monday, May 23, 2011

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 a success.  We were so honored and if anyone has pictures to share I would love to post them.  

We plan to attend the relay on June 4th if all is well with Ty, and we have our fingers crossed that he may even be able to participate in the opening "Survivors" lap.  I am really looking forward to that.  I think it will be very special for Ty and all of us.  Ty is feeling good.  His pain meds are reduced, his nausea is under control (for the most part), and his willingness to exercise and practice is improving.  And, despite his ups and downs, he definitely laughs more easily these days. 

THE BAD
Not sleeping is not good for any of us.  On top of that, Ty has been so incredibly emotional I'm not sure how to help him sometimes.  For example, today I was driving him to the toy store for a special treat and at one point he just screamed  the most piercing scream from the backseat I almost swerved off the road.  In a panic, I asked him what was going on, what was wrong, and he could barely speak because he was crying so much. Finally, I calmed him down and he answered me only to say... "I dunno what wrong wit me.  I just sad!"

I don't think I have to explain to you all how that makes my heart hurt.  In addition to feeling sad often, he is also physically agitated.  He complains that he can't get comfortable all day long, and it's as if he wants to jump out of his own skin.  I called the family psychiatrist at Sloan Kettering to see what he thinks, but he had little to offer right now.  I need to wait and see a while before he wants to prescribe anything to address his sleeplessness and his anxiety.  How sad is it that my three-year-old has anxiety problems? 

Sometimes when he is feeling this way, he reaches out his strong arm and I know he just needs a hug.  That right there is what makes it all okay.  I can't wait until the day he can wrap both of his arms tightly around my neck again.  I want to pick him up and swing him around into the most giant hug imaginable.  Like in a commercial when an adult lifts up a small child into the sunshine.  Some day. 

THE UGLY
It's been a long time, but I had a complete meltdown yesterday.  It started off perfectly fine.  Our great friends from Long Beach came to visit for the day: Anthony, Yasmine, and their children Eva and Theo.  Eva is Ty's age and they have been the best of friends since they were born.  Same goes for Theo and Gavin who were born just about 10 days apart.  We had so much fun together and it felt so good to have them over and catch up.  We love them so much.  Ty also sat at the kitchen table in his new booster seat and he made play-doh spaghetti! See picture.  He was so happy and Gavin was beyond ecstatic to play with his buddies.  I typically keep Gavin in a complete bubble because I'm afraid of germs, so to see him running around with kids his age was priceless.  I don't think he stopped laughing the entire time.


My meltdown didn't happen until much later that day, when all was quiet and I was trying to do the dishes while getting Ty's medicine ready for the night.  He was absolutely relentless.  He just kept crying for me, and screaming whining.  My patience was at its utmost limit and finally I reached my breaking point.  "What!"  I screamed after the bazillionth time Ty called for me... "What do you want from me!?!?!??"  I yelled so loud and I slammed down one of his books that I made him cry even louder.  Lou told me to go for a walk and I just ran upstairs to the spare room where we put Ty's toddler bed until he gets better and we can move him upstairs.  His tiny little bed is the same size as a crib mattress and it is just the most perfect size for curling up and crying.  I have done this before.  I don't know why, but I have always been drawn to his little bed whenever I want to feel closer to him and how things used to be.  I cried and begged.  I told God that he could take my arms, my legs, every piece of my soul.  I was begging with every ounce of my being, but I felt so useless because it's all already His.  I had nothing to offer... nothing to bargain with. 

After a good, long cry, I felt better.  I came downstairs and explained to Ty in the simplest terms why I think we should both apologize.  Then I said, "I'm sorry" and he made a sad face like he was just going to burst out crying... but instead he said "I sowwy, too."  Melts my heart and steals my breath.  He is simply the best boy in the world. 

This isn't getting any easier, but the Campbell's will continue to roll with the punches.

Saturday, May 21, 2011

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 in our chairs saying "yes, of course!"  So, why can't the levels be checked at home?  If we promised to get the labs in before 11AM on Friday, the pharmacy would have plenty of time to tweak the TPN medication before we need to hang it Friday night.  So began the mad rush to arrange everything in time so we could bust out of there!

(sidenote:  TPN stands for Total Parenteral Nutrition.  It is a large IV bag filled with potassium, dextrose/sugars, vitamins and lipids that go straight into the bloodstream.  Since Ty isn't eating well and he doesn't tolerate his feeds, TPN ensures him an extra 700 calories over a 12-hour period each night.)

Without getting into too many details, we arrived home Thursday night and it was completely chaotic with our home nurse meeting us upon arrival and spending 2 hours with us (!), Gavin acting like a lunatic and Ty whining non-stop with repetive demands like "I want to sit up... I want to lay down... I want to sit up... I want you to pick me up...I want a different show on..."  See!  Some things in my life are totally normal :)  In fact, my wonderful neighbors came and dropped off two delicious meals for us and I felt so bad because I could barely talk and get to know them amidst all the noise.  I felt rude, but I'm sure they understand.  I can't say enough about how helpful everyone has been.  So much of the help and support coming from complete strangers, too. 

Yesterday was totally frantic as well.  After my experience at the Putnam County Hospital, I found a much better resource at Vassar.  The Dysons Cancer Center and infusion lab bent over backwards for us.  They allowed us to come in first thing, they had pediatric oncology nurses, they had cartoons, coloring books and just overall kindness with Ty that went such a long way.  But, upon leaving I just had a feeling that something would go wrong simply because it always does.  I called Sloan Kettering an hour later (10AM) to let them know that I had the bloodwork done and to see if they got the fax yet.  I didn't get a call back until 2PM to tell me that the fax didn't come through yet.  I was on the phone for the next couple of hours to make sure they followed up with the lab, got the information they needed, and spoke to the pharmacist so they could make Ty's TPN for that night.  The pharmacy didn't get the order until 4PM.  The medicine didn't arrive at my doorstep until 11:30PM.  Ty woke up for the day at 4AM.  At least we did get a few straight hours in.  Enough to feel a little rejuvenated this morning and give me the energy to get back online.   

Ty is getting so strong!  Lou challenged him to sit up on the couch without pillows today, and Ty did it proudly!  I couldn't believe how long he sat up like this, playing and watching TV.  Probably about 15 minutes!  This will be great because it builds the muscles in his back and neck.  After he gets better with holding his upper body up, we will focus more on his legs.

I just watch a whole bunch of home videos that we've taken over the past nine months.  It is jaw-dropping, really, to see how far Ty has come.  He is such a fighter, it's amazing.  Here he is... the one and only... sitting up like a big boy and playing with a train.  I had trouble trying to edit this down, so please ignore my precious Gavin and his bad attitude about sharing.  Ty calls hin "The Lunatic" for a pretty good reason, and we all love The Lunatic like crazy :)  I just wanted you all to see Ty sitting independently, and how darn cute he is!

video

XOXO love, Ty.

Wednesday, May 18, 2011

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 is what happens to you,
While your busy making other plans,

Beautiful, beautiful, beautiful,
Beautiful Boy,
Darling, darling,
Darling TY.

Tuesday, May 17, 2011

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 never been challenged with such ferocity.  I had otherwise been unaware of how great my instincts are to protect my children.  I would have never imagined that I would be capable of witnessing and living this alternate life that I have been thrown into.  It's not fun, and it is cruel, but it is shaping me forever.  I think it's the same for Ty.  He has always been so special, but I promise you that he will grow into an amazing man who does great things.  I hold myself personally responsible to be sure of that.  So, I decided that I need to stop looking backward.  That we need to continue to plow forward with a vengeance. 


When I returned to the room after my shower, I told Lou that I needed to find the DNR that I carry with me and tear it up (a legal document that reads "do not recusitate").  He debated with me a bit, but ultimately agreed.  We are here at the hospital, subjecting Ty to his FIFTH shunt revision, because we have high hopes for a cure.  As long as Ty is actively being treated, there is no need for me to carry this horrifying sheet of paper with me everywhere I go.  I am not ready for that.  When I signed this in March, Ty was in a catasprophic state.  His doctors didn't think there was much more they could do for Ty.  They didn't know how he would respond to the radiation, and if he didn't react well they feared he would end up on life support.  We are not in that same place today, and I don't ever want to end up there again.  Tearing that piece of paper in two felt amazing. 

Ty's surgery went well today, but it caused a ton of bruising.  The VP shunt was placed back on the right side of his head, and his amazing sugeon used an existing hole in his skull for the tubing rather than drilling a new one.  Because of this, Ty's healing process shouldn't be as painful. 


To help you get a better understanding of what his VP shunt does: there is a tube running from the ventricles in his brain that is connected to a programmable valve placed under his scalp.  The valve opens to release pressure when the fluid in his brain begins rising.  On the other end of the valve is a much longer tube that runs all the way from the top of his head, down his neck, across his chest and into his belly (where the extra fluid gets dumped and reabsorbed by his body).  There is a large incision at the top of his head, a small one behind his ear, and another big one in his stomach where they reached up to snake the tubing all the way down.  It is that process that causes the bruising.

I just want to take a minute to tell you all what a great neurosurgeon Ty has.  He has two boys the same age as Ty and Gavin.  Over the weekend, he stopped by on both Saturday and Sunday to check in and say hello. Both days he had off, and both days he brought his son along with him to say hello to Ty.  After surgery today, he came up to our room to tell us how it went, then he reached into his pocket and handed me a picture that his son had drawn for Ty.  In the past, he has also showed us pictures of his son wearing Ty's "SuperTy" T-shirt to bed at night.  This is all so important to me because I know he is vested.  I know he cares about us and is doing everything he can to treat Ty as if he were his own.  This is how every doctor should be.  He has a warmth about him that makes us feel very comfortable.  It's like we've all known each other for years and I love him.  Some day I will have to tell him that!

I mentioned yesterday that we may be able to leave as early as tomorrow, but that is no longer an option.  We decided to keep Ty on TPN (intravenous) nutrition for at least another week at home, and there is a 24-48 prep period that is required before they can send him home with it.  They need to be sure that they have an accurate dose because it is very high in sugar.  If Ty's electrolytes are off, he may be at risk for hypoglycemia during the day when his pump isn't running.  We considered the pros and cons of staying in the hospital an extra night or two and how that might affect Ty mentally, but he is so incredibly underweight that we decided it is more important that we focus on beefing him up over the next few months if he is going to win the championship here. Ty was 27 pounds when he was diagnosed in August.  He is now only 22 pounds and he's grown about 6 inches since.  Ty has a lot of catching up to do.

So... onward and upward!  It's midnight, Ty slept all day and just informed us that he wants to "party all night" again.  Oh geez.  When Lou asked him why he likes to sleep all day and stay up all night Ty answered "Because!  That's why!"  Really?  That's the best you could come up with, Ty?  I'm exhausted and I do not foresee a restful night in my future. 

He isn't feeling the best tonight, but he's still pretty darn good considering he had surgery on Thursday, chemo on Friday, then surgery again just four days later.  He is SUPER TY!  Which reminds me... you may have noticed that the domain name on this blog is now redirected to http://www.superty.org/.  We just felt like it would be easier to share with a supercool URL like that, and we have plans to incorporate information about his foundation in the future (hence the dot-org...). Of course, the orginal blogspot URL will continue to work as well. 


Okay everyone.  Wishing you all a good night.  Ty and I are going to watch a Curious George movie and try to settle down for the night.  Thanks again for all of your love.  Hugs and kisses from Ty.

Monday, May 16, 2011

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 was up with him until I completely lost my patience around 3 in the morning.  At that time I rolled over and turned my back to Ty and Lou woke up and took over (I sleep in the hospital bed with Ty, Lou sleeps on the chair/couch next to us).  For the next three hours or so, Ty would ask for Daddy every five minutes or so.  He was relentless. 
"Daaaaa-Deeee.... Um... My head herwts"
"Daaaaa-Deeee.... Um... I can't get comfy"
"Daaaaa-Deeee.... Um... I have to pee"
"Daaaaa-Deeee.... Um... I cold"
"Daaaaa-Deeee.... Um... I sweaty"
"Daaaaa-Deeee.... Um... I can't sweep"

When Ty wasn't badgering us, his pumps were beeping the most obnoxious sound you can imagine.  BEEP.  BEEP. BEEP.  Air in line.  BEEP. BEEP. BEEP.  Infusion complete.  BEEP. BEEP. BEEP.  Occlusion.  It is a sound that haunts me :)  The phone rings while I'm sleeping and I jump up to call the nurse... air in line!

Of course, he's exhausted today.  He keeps falling asleep and I'm grinding my teeth because I know this means more of the same for us when night comes.  If only I was capable of taking a nap myself.  I know... I know... I should nap while he's napping.  It just doesn't happen for me.  I can't settle down during the day enough to actually fall asleep or even feel somewhat rested.  In fact, trying to take a nap only ends up stressing me out because I'm trying too hard to relax. 

The best release for me is to get outside, and I did just that yesterday.  My friend Catherine came to the hospital to visit with me, Lou and Ty.  Then she accompanied me to get a manicure and pick up dinner for the boys.  She shared some hysterical stories and we talked about silly, everyday stuff, and it meant so much to me.  I soooo need to do that.  To get out and talk about fun, normal things.  To get my nails done. 

Of course, anyone who knows me knows that it's no surprise I left my cell phone at the salon.  I thought it was lost forever until my Mom called the room this morning.  She said a nice woman at the nail salon answered my cell phone this morning and I should go pick it up.  Woo Hoo... I found my phone safe and sound less than 24 hours later.  This is not at all uncommon for me.  In fact, I was once on a business trip in Chicago, lost my phone in a cab, and someone mailed it back to me from Wisconsin.  Another time a NYC cab driver actually dropped off my phone (my entire purse, actually) at my apartment on Christmas Eve (in exchange for my best Christmas cookies).  I am unlucky in misplacing my phone, but very lucky in finding it.  It's like I always say... in my experience, most people are kind and good! 

Can't wait to get my sweet baby boy home again.  The doctor says the Cisplatin shouldn't knock him down as badly as he has experienced with his previous regimen, so I'm hoping he will be feeling pretty good and ready to start exercising so we can get him on his feet this summer.  In fact, the Physical and Occupational Therapists came by today and they were so great with him.  No matter what his mood is like (and as you can imagine, today he was very reluctant), they were so good at forcing him to participate and keep his arms and legs moving.  I was so glad they came because every day that he lays in a hospital bed can decrease the strength that we've been working so hard to build up.  In addition, the nutritionist put Ty on TPN again (which is intravenous nutrition - sugars and fats).  It is a relief because he has no appetite and hasn't eaten a thing in days.  His stomach has been deconditioned as a result, and it is too weak to handle any feedings through his belly tube.  So, TPN will at least help to keep him strong during chemo.  At home we will probably only administer TPN at night until he is eating better on his own.  I am so relieved  because worrying about his nutrition is one of my greatest concerns.  I don't think there's a normal mom on the planet that doesn't worry about what her kids are eating, so imagine what it's like when he doesn't eat anything while taking life-threatening medications.  I was told to try and get him up to 1,000 calories a day and I was only getting 300 - 400 most days.  It's stressful!  So, at least that weight is lifted from my shoulders for the time being.  Phew!  On the other hand, there are days when I think Gavin might be getting 2,000+ calories!!  He is in the middle of a growth spurt or something cuz that kid is getting HUGE :)  And, he's getting a bit of a 'tude himself. 


Please continue to share Ty's story.  All of your positive thoughts, prayers and best wishes keep us all so strong.   Tremendous thanks, hugs and kisses to you all. 

Saturday, May 14, 2011

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 enough. I also planned on getting outside today to escape for an hour or two, but it's already 7PM and supposed to rain.  I can't even tell you where the day went. 

In the past three weeks, three young warriors I know from our various hospital stays have been laid to rest.  I am in shock over the news of these beautiful souls, and it terrifies me more than I can possibly put into words.  These are kids that always appeared stronger than Ty.  Kids that seemed to be on the up and up.  I can't help but completely obsess over the news.  I can't stop thinking of their families, wanting to know how they are coping.  I started looking up other children that we have met along the way, and uncovering more and more disheartening news.  My mind has been spinning out of control and for the first time in a long time, I was afraid I would land in a very dark place - and I can't allow that to happen.  Not now.  Not when Ty needs me.  F-YOU F-ING CANCER!!!  How can all of these innocent children be taken this way?  I hate your guts!!   Finally, I looked up a boy who Ty shared his room with the very first day he checked into Sloan Kettering for chemotherapy.  His name was Spencer and today he is cancer-free.   THANK YOU SPENCER for renewing my hope.  I cried like crazy when I found your site on caring bridge.   

This weekend will continue to be a rough one for Ty, but he is a champ.  A little fighter, indeed.  I love him "big much" as he always says, and he will never cease to amaze me with his positive, fun-loving attitude.  Here is an oldie but goodie that keeps me smiling when I feel knocked down and wiped out.  I could spend hours looking at our "life before cancer" pictures.  How could I ever give up on this!

 

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 far!  He is getting sick here and there but he is okay.

I have kept myself pretty numb over the past few days, my mind is empty.  I can't allow myself to think about "what if" the chemo doesn't work, so I prefer not to think much about anything.  Instead I am passing the little time Ty allows me by uploading hundreds of pictures, removing the red-eye, and answering some long overdue emails.  Here are some recent favorites, starting with a picture and a video taken just an hour ago while we were doing "beads."  Ty has taken a liking to making jewelry because it is a craft that comes easily to him (physically).  He looks grumpy, who can blame him, and the "hat" on his head is actually a small hospital gown that we draped over his head because he can't wear a real hat with the open wound on top.  He finds comfort in wearing hats sometimes, and he didn't seem to notice the difference :) 



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This picture of Gavin just makes me laugh.  This is what he does when Ty's not around.  He's sitting in Ty's favorite chair, kicking back with bed head and a bottle like a little old man. 


In this picture Gavin is wearing a funny hat that was sent to us by our great friends at Savannah's Organic Ranch.  Savannah Sachen was an angel among us.  She was one of my very best friend's niece, and the first child I ever knew personally who battled this disgusting disease.  Her mom is doing amazing things to embrace Savannah's dream of becoming an organic farmer.  Visit http://www.savannahsorganicranch.org/ for more information.
And, lastly, here's a picture of Lou and Ty at his cousin Ryan's sixth birthday party this weekend.  My guys are lookin' good!  Happy Birthday to both of our nephews Ryan and Richie whose birthdays were last Friday.  We love you :)


Thanks, everyone and goodnight.  I think Ty is finally beginning to dose off and I'm going to take advantage.  He told me he's gonna "party all night," but the meds seem to be getting the best of him :) 

The sleepy boy... just looking at this picture reminds me that it's time for bed :)  Hugs and kisses to all.

Thursday, May 12, 2011

"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 before placing new hardware.  On that same day, Ty will be given his chemotherapy treatment via a 24-hour infusion.  After a short but aggressive course of antibiotics, a new VP shunt will be placed on either Monday or Tuesday - before Ty's counts drop as a result of the chemotherapy.  This is a very important factor to consider, because if Ty's platelets and white blood cell counts were to drop before his new shunt could be placed, surgery would be out of the question and he would be at an extremely high risk for infection given the open access to his brain when the tubing is externalized.  His oncologist has assured us that he does not expect Ty's numbers to drop until two weeks after the infustion, but I am a nervous wreck over the "what-if."  Ty's history proves to be very unpredictable, but I have to just trust them on this one.  Not easy, but okay. 

I hate that we have to do this, but I pray that this time everything goes smoothly for a change. It will.  It has to.  Now... how can I possibly sleep when I need to wake up in 3 hours?  I have completely disinfected the house in the hopes that we will be home by mid-week next week and Ty will be immuno-compromised.  I have packed several bags filled with all of his favorite pjs, snacks, games, etc., and I uploaded some photos and videos among other chores to keep me busy while I'm at the hospital.  Here are three cute clips: Ty getting stronger... Ty loves ice cream like a big hungry bear... and Ty loves you, bye bye :)  Enjoy!  And, as always, a thousand thanks for your continued thoughts and prayers. 

Ty getting stronger (taken two weeks ago, today he can lift his left arm unassisted)...

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Ty loves ice cream like a big, hungry bear!

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Ty says "I wub you"

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Wednesday, May 11, 2011

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 motivation starts to decline?  I already know the answer and I'm sorry for even taking this in that direction, but I am sad and I don't want to see him sad even for one more day.  I know Ty is amazing - he is SuperTy - and he never ceases to amaze me.  I'm sure he will take this on like the little champ we all know and love.  Aargh!  I'm just so mad that he has to.

A damper to an otherwise beautiful day 
Instead of traveling all the way to the city for some pre-chemo testing, Lou called our local Putnam County Hospital yesterday to explain Ty's situation and to see if their lab can handle the bloodwork.  He told them that Ty has a mediport, and that he needs to have blood drawn as part of the advance screening prior to chemo.  They said they could do it, no problem.  The doctor ordered a 24-hour urine test followed by bloodwork.  Yesterday I rushed over there to pick up the special "pee-pee can" for Ty at 6PM and I was told to come back the following day at 6PM to drop it off and to get his bloodwork done. 

When I got there today it was just after 5.  Gavin was asleep in the car with the babysitter.  It should only take a minute.  Unfortunately, when we entered the room I was told that the phlebotomist was not licensed to draw off the mediport line.  That she would have to stick him in a vein.  "But, my husband called you... you said you can do this off the needle that is already in his shoulder??..."  No.  They didn't recall that conversation.  Apparently, they don't have any nurses on staff in the lab, and NY State requires that a licensed nurse draws off the mediport.  "Well, this is a hospital, right?  Can't we get a nurse in here??  He is a weak baby and finding access to a vein in his arm is not going to be easy - trust me!!"  I asked them to put themselves in my shoes.  That he is three years old and I promised him up, down and sideways that he would not get any needles today.  I explained how important it is that he believes me and trusts me through all of this.  How I always tell him when something is going to hurt and when it isn't.  I was crying and yelling!  They looked at the bald spots on his head.  They stared at the scars.  Then they asked me to be patient while they tried to find a nurse who could help out.  More than one hour later, I was told no one was available and Ty ended up with a needle in his arm.  I swear, what I want to say on this blog might get me arrested.  When I got back to the car, Gavin had been crying for over a half hour and his diaper leaked. 

To say I was upset over the outcome in this situation is an understatement, but I do want to give credit to the women who ended up drawing the blood.  They were very sympathetic, they were very professional and they had excellent skills.  Ty didn't require more than one stick, and they were as gentle as possible from start to finish.  Afterward he was walking around showing his boo-boo to anyone who would look.  I guess you could say that he kinda liked the attention he got for it afterward - no surprise there! 

Tomorrow I will spend the day bending over backwards to keep Ty smiling from ear to ear.  I will be fanning him and feeding him grapes.  I hope to capture some fun pictures to post for you all.  Thank you for the love and support.  Giant hugs and kisses from Ty and all of the Campbell's tonight.  XOXOXOXOXO!!

Monday, May 9, 2011

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 is it possible that his disease is spreading when he is singing and laughing out loud like this???

We took the boys to the park this afternoon to picnic and fly kites.  It was the most beautiful day and Ty laughed at me over and over again as I tried to get the kite in the air and when all of our food was blown off the table from the wind.  It really was funny; nothing ever works out like I plan it to.  I gave him so many kisses today, he is probably so sick of me smothering him.  He was singing in the car all day long.  Today is my Dad's 70th birthday (happy birthday Dad! - we love you more than you can imagine) and the song of the day was "Happy Birthday to Pop-Pop."  Ty also convinced me that we needed to go out to buy Pop-Pop a present, and that he would like a new toy, of course.  Here they are together just last year.  Hope he wanted a rainbow colored collection of bouncy balls for his big day!  That's what seven decades will get ya! 


Ty also had a real bath today, and it was long overdue.  He fought me tooth and nail, but afterward I could tell he felt soooo good.  Who doesn't feel great after a nice, long bath?  When I dried his hair, I even noticed that his curls are just beginning to show again - check them out in the picture below!  I was so excited.  Of course, that joy was quickly stolen from me knowing how short-lived this is with chemo around the corner.  It's just so unfair.  I just want him to be normal again... To get back on his feet... To go out in public and not look like "the sick kid" anymore... I just want him to be all better.

 
Alas, his doctors don't want to wait another day before starting him on treatment - and neither do we.  The rate at which his new tumors are growing (as seen in Friday's scan) puts him at too much risk to delay treatment in order to replace his shunt, so instead we are planning to begin treatment on Thursday while keeping Ty on prophylactic antibiotics with the hope to keep any infection that is harbored in his shunt under control when his white blood cell/neutrophil counts drop.  There may be an alternative plan to replace the shunt during his chemotherapy, but it is complicated so I will save my breath until I know more and can explain it better. 

The bottom line is, Ty is going to get really sick again. Before he even had a chance to enjoy feeling better after all this time. He is still so weak and so insecure to start off with, I am crushed by the thought of it.  My poor baby.  Please, God, let this work.  Save my baby boy.   

XOXO.  With all of our love to you all.

Sunday, May 8, 2011

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 been talking a lot about how different our lives are and how hard it is to watch Ty going through this pain and how hard it is because he is often so unhappy.  We worry about Gavin.  We worry about what is going to happen to all of us.  Despite all of this, spending this weekend in the home I grew up in with my Mom doting on me somehow makes everything feel better.  THANKS, MOM.  I LOVE YOU.   Next year I will be doting on you!

Happy Mother's Day to all of you amazing Mom's out there.  And you are all amazing.  For many of you, I know it's your love for your own children and grandchildren that have brought you so close to us and to Ty.  Hope this weekend was a great one for all of you. 


That's baby Ty on his first Christmas.  XOXOXO!

Friday, May 6, 2011

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 entire time.  Looking down the tunnel to see his tiny little nose and his big bright eyes looking down back at me, I tried to focus on praying for him. 

Sometimes when my mind gets the best of me, I face conflict when I'm trying to pray.  There are so many children afflicted with cancer, what would make one more deserving of a miracle than another?  And, of course, I want each and every one of these beautiful innocent babies to get better, but if there could be just one miracle please let it be Ty!   I can't help but be selfish, and I hate how selfish I sound when I'm talking to God, but I think he understands.  How could I not be?

So, my mind went off on a tangent over that long, painful hour and several times since. I know there are miracles.  Many of you have even shared your amazing stories with me about how wrong doctors can be, and how your loved ones have beaten the odds.  And, I believe in Ty.  I know it is his own will, strength and determination that has gotten him this far.  But, if there is a miracle to be had… how do WE win the miracle lottery?  How can I "pray harder" so I can be heard?  I'm not even sure I know what that means, to pray harder?  Do I need to be on my knees until they bleed?  Is that more effective than laying in bed or praying in the shower?

I ask God all the time to tell me what I need to do to help Ty be chosen.  I will leave my family and let him live his life without me as long as he can live his life.  I will do whatever I am told I need to do.  I hate myself when I begin making promises (I'll go to church more, I'll be a better person) but sometimes I can't help it.  When I was recently sharing these thoughts with one of my best friends, Nancy, she made me laugh out loud.  She was listening to my prayer dilemma and she said something along these lines:

"Well, Cindy, I love you and the next time you are talking to God, please tell him that I will do anything for Ty's miracle, too!  Tell him that I will even be 400 pounds for the rest of my life.  I swear that I would walk around and live my life as a 400 pound person." (Please note that this is coming from a petite individual).  Nancy, I love you.  I don't think that is the kind of sacrifice God is looking for, but Thank you so much J  I am so lucky to have such great friends who support me and make me laugh through all of this. 

Today's news isn't great, but we are okay.  Ty will begin chemotherapy in about 2 weeks, and there has been reported success with the treatment he will be getting amongst patients with ATRTs (Atypical Rhabdoid Tumors).  Although the pathology on Ty's particular cancer isn't exactly the same as an ATRT, it behaves very similarly so we hope this will bring positive results.  In the meantime, he is singing and laughing more and more.  He is amazing!  I haven't seen him looking and feeling this good in months and it fills our whole house with warmth and white light.  The Campbell's are going to get through this. 

Love to you all.  Thank you for caring so much. 

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 feel kinda like a crazy person and as much as I feel the anticipation for the results; at the same time I don't want to know.  I enjoyed the feeling of simply not knowing for the past week and I am so afraid of what they may say later today.  I feel all of your love and support around me, and it helps more than you can imagine.  Thank you.

Hoping that today's scan will provide RELIEF as opposed to anything else.

Monday, May 2, 2011

Wow!

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 helped me so much (we spent that entire day together on September 11th/when she lost her incredible brother).  Finally, on Sunday, we were visited by two of Ty and Gavin's absolute favorite people, our precious "Sissy" and Colleen.  While I was still working, Sissy was caregiver for Ty and Gavin since they were babies.  When Ty got sick, her daughter, Colleen, took Gavin under her wing and helped us so, so much by loving him and having fun with him when we had to give 100% to Ty.  We love you guys!  Finally, Sunday night was spent at Nana and Poppa's house for a big, fun dinner.  What amazing news to close out a great weekend. 

Looking back, it's so strange that Christina and I spent so much time reflecting on September 11th just hours before history was made. 

A moment to reflect
It feels like yesterday that I watched from the rooftop of my apartment building on 24th Street, a cloud of smoke from two beloved buildings.
It feels like yesterday walking out into the sunshine on that beautiful morning and feeling something evil and terrible in the air.  I could see straight down 5th Avenue the entire way, and the devil was emerging right there in my backyard.
It feels like yesterday that I walked to the office because I simply didn't know what else I should do and I needed to connect with my friends and loved ones. 
It feels like yesterday that I gathered with my friends after the buildings fell down, sharing the shock and the horror.  We dodged the crowds flocking uptown as we walked downtown instead, with no idea where else to go but my apartment.
It feels like yesterday that I left everyone in the shelter of my apartment to travel further with my Christina in search of her brother, Andrew. 
I can still feel the eternity that we spent waiting for him at his firehouse.  Engine 24, Ladder 5.  No word all day.  Nothing well into the night.  Back at my apartment did we even sleep?  No word into the next morning. 
It feels like yesterday when we waited at line at the hospital to check the lists for names of people brought in, expecting pages upon pages, and finding only one short sheet.  As I turned around to leave, I spotted my co-worker waiting in that same line.  No words spoken, just a knowing nod.
It feels like yesterday that every single car in the street, every pole, every window in every building for blocks upon blocks upon blocks by my apartment were covered with missing persons' signs. 

Yesterday, finally, a small justice was served.  Yesterday, some relief was shed.