Thursday, December 29, 2011

MRI Details

Okay.  Exhale.  But don't get too comfortable, because there is always an ounce of uncertainty in the doctor's eyes.  I hate that.  Nothing can ever be 100% (I'll explain), but obviously no visible cancer on Ty's MRI is absolutely amazing news.  We are so grateful and so relieved.  Thank you all SO MUCH for your prayers and support.  As always, it helped us through the anxiety and helped Ty remain cancer free.  Six months!  May he remain cancer-free forever.  Thanks be to God. 

We were told that what appears on the scan was most likely the result of an isolated incident where Ty had a small hemorrhage near the brainstem, causing stroke-like symptoms.  The hemorrhage is believed to be a delayed, but not uncommon side effect from radiation.  Although he completed his radiation more than six months ago, Ty's brain is still healing from the trauma and as it heals there is evidence of several small, sporadic bleeds within the brain.  This is normal and expected.  Unfortunately, when something like this happens in the brainstem area where Ty has already undergone so much... the effect can be more noticeable and it will take a long time for him to recover physically.  Possibly two to three months before we see any improvement on his left side.  So sad!  Especially considering how far he has come, he was oh so close to walking again.  This is a major setback with regard to his physical recovery, but we'll take it.  As long as it isn't cancer, it isn't deadly, and it isn't permanent - we are thrilled. 

Now for the tiny, invisible gnat that remains hovering in front of my face.  Flying back and forth, too close to my eyes and in and out of my ears.  The results from the MRI weren't delivered without a shadow of a doubt.  There is still a possibility that what we're seeing is the early stages of tumor activity near Ty's brainstem, but our neuro-oncologist and neuro-radio oncologist were very confident that it was treatment effect - not cancer.  They both agree that the slightly highlighted areas in the brainstem area represent swelling, not tumor, and that Ty will be able to recover from the side effects over time.  However, when we ask "how do you know for sure that it isn't tumor?" the answer is simply, "we don't."  That one comment in the context of an otherwise joyous and jubilant conversation stabbed me in the gut where it remains as a reminder that we aren't out of the woods yet.  But... we are doing great navigating our way through the forest.  Beyond great.

Several people have asked me what Ty's prognosis is now that he has had several clean scans.  I'm not sure how to answer that question, and I don't think his doctors would have a definitive answer either.  I am confident that he is going to beat this... that he has beat this... that he will never, ever, ever have cancer again.  There are no documented cases like Ty's, so our doctors can't really be sure how his cancer will react to treatment.  We follow protocols for similar tumor types, but there is always the question of whether Ty's tumor behaves more like a sarcoma (a type of tumor that develops from bone or muscle) or an AT/RT (a tumor that develops from brain tissue).  His official pathology is a malignant rhabdoid tumor that originated from bone and later metastasized into the brain. 

I read somewhere that an AT/RT patient isn't considered cured until they show clean scans for FIVE YEARS without any evidence of disease because recurrence is so common.  That scares me to death, but what else can I do but hope and pray with every ounce of my soul that Ty has beaten this once and for all.  That's it.  Be happy with today and enjoy every minute I have with my special boys.  And, in five years - four and a half, actually - I will finally shout from the rooftops that Ty is cured!  I hope you are all still following us at that time and not bored :) That sounds so far from now, but when I think that it has been six months already I realize how incredibly fast time is flying now that Ty is feeling "bedda".  Time stood still when he was sick.  It feels like yesterday and I remember every excruciating moment.  Now that he is better, the days are filled with fun and laughter and they are zipping by all too fast!!  I need to take more pictures :)  I am so blessed. 

Thank you all, as always, for everything.  I am the luckiest person on the planet.  Today was indeed a good day.   


 

Wednesday, December 28, 2011

Scared to death

We got the call to confirm this afternoon.  Ty's MRI is scheduled for 8:30AM tomorrow, which means we will leave the house around 6:00 so we can get there an hour early for anesthesia clearance.  I feel so, so sick.  I can't wait for tomorrow to be over, and I don't want it to ever come. 

In the meantime, we have been passing time by playing with our new treasures. It isn't Christmas without a new Hess Truck (this one has a jet plane attached!), and Gavin loves this crazy bouncy reindeer toy that Aunt Lynda and Uncle Rudy found for him.  He's obsessed, it's really cute.  In fact, tonight he tried to pull him up onto his high chair so they could eat fish sticks together. 

This picture was taken before Ty's weakness set in on his left side


Gavin, his crazy hair, and his Reindeer

We had a really nice day today doing ordinary things under the most extraordinary circumstances.  Cleaning the house, playing games, opening new toys, building race tracks for our new Hot Wheels...  but I can't help my mind from wandering into a whirlwind of worry and darkness.  When I see how limp Ty's left arm is.  When I watch him scoot over to his toys with less than half the strength and stability he had two weeks ago.  Aargh!  My skin is just crawling!!! I am scared to death. LEAVE HIM ALONE!  Please don't let this be cancer.  Anything but cancer.  My poor baby boy.  He should be walking by now.  He should be building up his strength so he can play on a playground this Spring.  He should be getting stronger every day, not weaker.  It's just so f*#&ing unfair.  Why is this happening to him?  But, you would all be so proud if you could see him.  He has an unbreakable spirit and he remains happy and giggly despite this setback.  I aspire to show even a small percentage of the same strength, confidence and courage that he has.  He is my superhero and he won't let this get him down. 

 

Two of our friends drove up from the city to spend the evening with us and that was a tremendous help.  It forced us to stay positive and to try and allow our minds to forget about tomorrow for a while.  We stepped out for a quick dinner and I was relieved to talk about things other than pediatric cancer and MRIs over a delicious meal.  Unfortunately, I want to throw up every last bite right now.  Every time I stand up I feel disgustingly nauseous.  I have a headache from involuntarily clenching my teeth all day.  My stomach is cramping. I am such a wreck, I can't stand it, but I am staying strong for Ty.  I share only smiles and laughter with Ty and Gavin because that is what they need to be surrounded by.  Not my fears and my worries.  I hold onto all of that until I have a chance to spill my guts here.     

Colleen has upped the ante from 500,000 to one million angels.  That's how many she tells me will fill the room tomorrow.  One million plus one... two... three... That is what I envision as we leave our sleeping baby in the "cold room".  That more and more angels are squeezing in as the door closes.  That they fill every bit of air in the room and lay over my baby in a blanket of light.  It gives me so much comfort, that vision.  As Father Jordan said last Wednesday, "he is going to be okay." 

We have received a few new gifts in advance of this MRI that I will be bringing with me tomorrow (along with the dozens of other items I bring to the hospital when I am most worried).  A "miracle" star, a lucky ladybug from a little girl that has a great story behind it, and the most beautiful bracelet I have ever owned.  My neighbor made it just for me and it is so special.  It's a charm bracelet filled with saint medals and spiritual charms - some old, some new.  It makes a lot of jingly noise, which I love, and I will add some of my own charms to it soon (including the "keep fighting" charm that I wear every day and the Saint Peregrine medal that I pin to Ty's clothing sometimes).  All of these things help to bring me peace while we sit and wait for the results. 

Ty and Gavin are so lucky and so loved.  They have gotten some very, very special care packages this holiday season, and I want to take a second to thank everyone.  I can't tell you how special it is to see Ty's face light up when a package arrives.  He is always so excited and so grateful.  One fun thing that was included in a great big package from friends in Texas - because everything is big in Texas ;) - was a package of wish paper.  We had never seen this before.  In the note, our friend suggested we use the wish paper on New Year's Eve, but I felt tonight was even more appropriate.  We wrote several wishes down for a clean MRI tomorrow and always, we wished for a cure for cancer, Ty wished for "no more cancer" and, of course, candy.  Then we rolled up the paper, lit it on fire, and "POOF" watched it float into the sky and disappear.  Our wishes went up to heaven :)  I truly believe they did!!  Here's Ty participating in the fun.  You can see a floating, burning wish up in the corner on the last photo.  Ty was watching it float away in awe.  It was really a lot of fun. 




Isn't he looking like such a big boy!?!  I am amazed at these pictures and I see him every second of every day!  Before I sign off for the night, I want to leave you with these positive truths.  I believe that Ty remains cancer free and that the MRI will prove just that.  I believe that he is suffering because the daily chemotherapy is making him weak and that's all. 

I believe in our love, and the power behind it.  I believe that we can move mountains together.  I believe that our souls are intertwined.  I believe that he is a miracle and I am so happy he is mine. 

I am off to go snuggle up to my sleeping boy, hold his warm hand in mine, run my fingers across his head and stare at his soft, peaceful face for the next five hours until we leave for the hospital.  Love him so much.   Thank you for all of your love and support. 

 

Monday, December 26, 2011

Blessed

We are so blessed and lucky.  This Christmas was perfect.  Ty and Gavin had the time of their lives and we had so much fun watching them.  We went to Lou's parent's house for Christmas eve, then drove to my parent's house on Christmas morning.  We were surrounded by family both days and we all shared a lot of much needed laughs. 

The first two pictures are my handsome boys all dressed up for the holidays. 



Despite his weakness on the left side, Ty has been in amazing spirits.  Must be all the joy and celebrating that Christmas brings :)  He has been so happy, and he looks sooo good.  It's not just me, everyone agrees.  The fact that he is happy and without pain or nausea helps me to feel confident that the MRI on Thursday will remain clean.  It simply has to.  I don't know what could be causing his setbacks, but I have to think that all of the heavy duty medicine we are pumping our poor little guy with on a daily basis can't help.  On Wednesday his fifth cycle of oral chemo will be complete and we will begin the sixth cycle which includes Cytoxin and Celebrex in place of the Etoposide/Accutane he is on right now.  Hopefully the switch in medication will help his strength to improve.  Maybe we can even take a week or two off before the next cycle to help him recover.

BTW - Ty picked out the most perfect Christmas tree this year.  Here it is on Christmas Eve, after Santa came for a visit.  So exciting!!



There were some great presents under the tree this Christmas, but you all know that the greatest gift of all was hearing Ty's voice and laughter fill the room.  We put out cookies and chocolate milk (because Ty thinks Max and Ruby were right - Santa probably prefers chocolate).  In the morning Ty was so excited to see the footprints from the fireplace, the crumbs left on the cookie plate, the stockings filled to the brim and, of course, the presents!!  He calls Christmas "chrismy" and he calls presents "pennies".  Ty, you are my best Chrismy Penny ever.   You, your daddy and your brother are my whole world.  Below are the boys with their favorites.  Ty got an old fashioned robot just like Max, and Gavin got a bunch of Toy Story toys, including Jessie.   




It's always a little sad when Christmas is officially over.  We saw my brother and family for brunch this morning before heading back home from Long Island and now we are watching Love Actually  before deleting all of the Christmas specials and Christmas movies from our DVR.  

Before signing off, I will leave you all with one of my favorite Christmas songs.  It tells the greatest story ever told in a beautiful way.  Fills me up with love :)  Goodnight and God Bless.



Friday, December 23, 2011

We'll be okay

Everyone is worried about Lou and I (and of course, Ty) after yesterday's post.  I just wanted to send a quick update to let you all know that we are doing just fine.  In fact, Ty had a better day today and that is a relief.  He is still weak, but he woke up stronger than yesterday so we hope for a slow and steady return to normal.  And, of course, a clean MRI next week. 

Lou and I remind each other throughout the day that the CT scan showed no evidence of disease.  We remind each other that Christmas is in two days and we are so happy to have Ty with us.  We remind each other that no matter what happens, we have a plan and we will never lose hope.  We are okay and we are happy.  I promise :)

Tonight I am really excited about Christmas.  I have a pile of toys all wrapped up and tucked away and I realized that we have just a couple of days until we will let Gavin and Ty loose under the Christmas tree.  It is going to be so magical. 

Thursday, December 22, 2011

Come on Christmas Miracle!

Come on, Christmas Miracle!!! Please don't lose momentum now!!! While I know what an amazing and joyous miracle it is to have Ty here with us this Christmas (and that alone is truly a miracle), I am asking everyone to please keep Ty in your prayers and ask God to allow his healing miracle to continue for many, many, many more Christmases to come. May his cancer never, ever, ever, ever come back.

We went to the hospital today for Ty's bi-weekly check-up and infusion. We woke up early so we could participate in a Christmas party that was being held on the pediatric floor. When I took Ty to the bathroom before getting in the car, he was unable to hold himself up on his own two feet. This is a drastic change from yesterday, which is always alarming. I laid him down to change his pants and I saw him reaching over with his right hand to pull up his left arm, which was otherwise limp. He gave me a look like, "huh, that's weird" and I gave a calm but urgent call out to Lou to come and see what was going on. Ty was so incredibly weak on his left side this morning that the two of us could barely focus the entire rush-hour ride into the city. It doesn't make sense. "What could this possibly be other than cancer?" is the only natural thought that was running through our heads over and over and over again.

His doctor simply couldn't explain it. Once again, Ty has stumped everyone. Of course, they ordered an immediate CT scan to check for any tumor activity. Lou and I were sick all morning in anticipation of the scan. Time was standing still. We put on our best smiles for Ty, and for the sake of Christmas and all of the hard work everyone was putting into the party, but I made eye contact with countless people throughout the day who were wondering why my eyes kept filling up with tears. I am still not over it.  Ty, on the other hand, seems to have no idea.  He was happy as could be today!!  He had so much fun and was smiling from ear to ear all day.  He has such an incredible spirit, I am so in love with that little boy. 

The good news is, the scan didn't show any tumor. Partial exhale, thank you, God.  There is one questionable area on the brainstem, but we need an MRI in order to draw any conclusions whatsoever about what's going on there. So, instead of January 4th, Ty's next MRI has been bumped up to Thursday, December 29th. Christmas and all of the fun we have planned over the next week should help Lou and I hold it together until then. Not knowing for sure is better than hearing those words we are most fearful of. I hate the uncertainty, but I hate bad news much, much, more. I am okay with this for now and I am trying to remain confident that the scan on Thursday will remain clean.

I am so tired of playing this guessing game. I don't want to try and laugh it off while saying things like, "Ty has broken the rules again, and no one knows what all of this means! His doctors just can't keep up with him <insert smiley face>." In reality, there's nothing amusing about this. There is no smiley face to insert. Watching every symptom... tracking his every movement with scrutiny... banging my head against a wall hoping for an epiphany that explains it all (other than a relapse)... feeling so sorry for him when I see him lose some of the independence he's been working so hard for because he can't get around again.... it's literally eating me up inside. Or, rather, it's more like I'm suffering from a very slow and deadly bleed that keeps me teetering on the brink of consciousness. I am losing it a little over here.

When we were waiting for our CT appointment, we had about 1/2 hour to kill. I told Lou I wanted to take Ty across the street to Saint Catherine's church. I'm so glad we did. It was surprisingly warm outside and while I was sitting in the pew I saw the priest who helped me back in May when I stammered through the church doors in hysterics. He recognized us immediately and was so happy to see Ty looking so well. I told Father Jordan about the upcoming CT and he blessed Ty and told me "he's gonna be okay." I believe him. I do, with all of my heart. I know you all believe, too. Thank you for that.

Goodnight, everyone.  Hoping to report that Ty is stronger tomorrow, or at least the same. 
XOXOXOXOXOXO,


Monday, December 19, 2011

Anything but cancer

Cancer is not welcome here.  It can never, ever, ever, ever, ever come back.  As I mentioned yesterday, Ty has been showing some physical symptoms that we haven't seen in a long time.  Please, God, don't let it be cancer again.  Anything but cancer.

I spoke to Ty's doctor first thing this morning and he believes the increased weakness we are seeing on Ty's left side is not related to new cancer growth - but that doesn't rule out the possibility.  He feels that Ty is suffering from spasticity, which is becoming more visible now only because Ty is getting stronger.  As Ty's muscles begin to regain mass and tone, the neurological weakness on his left side is becoming more noticeable.  This spasticity is likely permanent, but also treatable with continued therapy.  When I spoke to his physical therapist later today, she agreed that it would explain what she is seeing, and then she reassured me that walking again is still a highly attainable goal for Ty.  And "he will get there, he will walk on his own again," she said. 

Unlike an older person who suffers a stroke, when spasticity like this appears on someone so young it is hard to say where he will net out because there is still so much growing and brain development taking place.  In fact, my doctor warned me that there will likely be additional neurological issues that present themselves as Ty gets older.  I am sad and mad!  But I'm also okay with that.  Just the fact that we use the words "getting older" in conversations about Ty makes me rejoice in the miraculous fact that he is here.  I have no doubt that Ty will continue to roll with the punches and amaze us with his strength.


Ty's doctor referenced two reasons why he felt confident that these issues aren't related to new tumor activity.  First, because if there was enough tumor burden on Ty's brainstem to be causing weakness, he felt we would be seeing other symptoms at the same time (headache, vomiting, heartrate fluctuation or vision issues).  Second, because I told him that Ty's hand was cramped closed all day, but semi-open and loose when he was sleeping at night.  He explained to me how that would indicate spasticity because spasticity occurs when the brain is consciously trying to move certain muscles, but the muscles don't/can't respond properly.  When I crawled into bed next to Ty tonight, I saw that his left hand was shut tight.  Can you even imagine how scared that made me?  I tried to open it and it snapped back closed.  Again, I forced his fingers around my hand and I just prayed.  I found myself repeating the phrase... "please don't let this be cancer, please don't let this be cancer, please don't let this be cancer," over and over and over for who knows how long.  Eventually I let go of his hand and it fell limp, fingers open, no cramping whatsoever.  A sign?  I certainly think so. 

Thank you all for your continued prayers and support.  I'm going to try this sleeping thing again now.   

Restless night

I was exhausted last night so I went to bed early, without even picking up the house.  Of course, that backfired on me because I've been up since two in the morning tossing and turning.  Now I'm sitting in my living room surrounded by the mess that awaits me and wishing I was sleeping soundly. 

I am worried, but not terribly.  Ty's left side seems weaker than usual.  His hand was cramped closed the majority of the day and he can't lift his arm as high as usual.  I've been told he is going to have good days and bad days so I just keep reminding myself that it was a bad day as far as his physical progress goes.  Praying that tomorrow will bring improvement.  I was obsessing over him while he was sleeping and happy to see that when he is relaxed his fingers in his left hand are loosely open (there were times when his tumor was acting up that his hand would remain severely cramped closed at all times).

He is such a sport about it.  It doesn't even seem to bother him when something like this happens.  He just finds ways to accommodate and I am always so impressed by that.  For example, when he was playing with his toys I noticed him lifting his left arm with his right hand to move things along and he did so with a smile.  If he's not worried, it helps me to worry a bit less.  Don't get me wrong... I will be calling his doctor in about five hours and I've already sent him an email for reassurance. 

We have been so busy preparing for Christmas, I wasn't able to share any updates for days!  Below is one of the Christmas photos we took of the boys.  I just love the way Gavin is holding Ty's hand.  These two melt my heart. 


I went out to dinner in the city with a friend on Saturday night and had a great time.  It was so nice to catch up and know that Ty is perfectly fine at home with his Nana for a few hours.  How my life is finally turning around!  It's wonderful.  I am happy to step out from the crazytown that I live in most of the time and make pretend that I remember what it is like to be normal.   

I am really looking forward to Christmas.  It is going to be so magical this year.  Even though I should be panicking because I have so much left to do, I could care less.  Our tree is gorgeous and I just love this time of year.  Everything will get done and I imagine this will be the best Christmas we've ever had.

At dinner I learned that a mutual acquaintance lost her daughter to cancer a few months ago.  My friends had kindly conspired to keep this information from me (I was aware that the little girl was in treatment) but it came up in conversation last night.  I ended up crying during my drive home, for her and for another little girl I know of who lost her life to neuroblastoma this week.  There simply isn't enough being done to support new initiatives in pediatric cancer and it's disgusting.  It makes me sick that there haven't been any major advances in thirty years!  That children are following adult treatment protocols that are highly toxic and met with much less success.  Lou and I will never stop doing what we can to help change this.  In fact, we are talking with our neurosurgeon on Wednesday to discuss ways in which we can leverage social media and under served research to gain momentum for a few niche pediatric brain tumors (i.e. rhabdoid tumors).  Some day things will be different. 

Speaking of which... have you noticed all of the green posters?  All of the amazing visibility Saint Jude's has this Christmas season?  Every time I see a poster I smile from ear to ear. A photo of a beautiful baldy that reads "help to save her life".  Finally.  I have always been discouraged by how little is out there from a marketing perspective to support pediatric cancer research.  I never understood it.  These children are our future and the statistics are crushing!  Pink is everywhere for breast cancer.  When will there be similar marketing campaigns to supports the children?  I think it will happen, and soon.  Pottery barn was selling beautiful candles where all proceeds go to Saint Jude's and they were sold out before I could even get my hands on them!  Well, that's not true, I got a hold of a store in Pittsburgh that had a handful left and I cleaned them out - had them shipped out to me.  If you are asked if you would like to make a donation to Saint Jude's during your next checkout at the supermarket, CVS, Target, etc.... please do so.  Please.  I know things are so difficult right now, but as Mary Pallota says... you can always give a half a sandwich.  Mary and The Guardian Brain Foundation has been there for us from day one and we simply adore her :)  She has such powerful love for the cause and a perfect perspective. 

Click here to see how one of my favs, Jennifer Aniston, is involved.  The picture below isn't an actual link to make a donation, but I wanted to share an image of the types of posters to keep an eye out for this year.  They are everywhere and I couldn't be happier about it. 


Just one last update before I go.  This afternoon I was researching AT/RT long term survivors (5 years or more) in order to see what their treatment protocols were and how long they continued with oral chemotherapy.  I only found three so far... so unfair... but their stories only strengthen my hope.  Ty will be among them, I just know it.  In fact, there was one girl who shares his miraculous story almost exactly.  She had MRSA meningitis, she had multiple shunt complications, she had metastases and she had lepto-meningial disease that was cured with radiation.  Unbelievable.  She is five years cancer free.  That is just amazing.  I hope I can find her parents to share stories and get some advice. 

I am going to try and catch a few more hours of sleep before the household is buzzing again.  Goodnight everyone, and thank you for your continued prayers and support. 

Wednesday, December 14, 2011

milk and honey

Today has been an extra mushy day.  I have given Ty about 200 hugs and 1,000 kisses already, and the night is still young.  I'm smothering Gavin with mush, too, but I have to chase him down and tackle him for it.  He likes to put up a fight just for fun.  Ty, on the other hand, has always been a love.  He was born to cuddle and I swear to you his skin tastes like milk and honey.  Strawberries and cream.  Marshmallow fluff.  Now do you see why I can't get enough? 

I got word recently that Ty's next MRI will be on Wednesday, January 4th.  When I looked at the calendar my jaw dropped when I realized that is just three weeks from today!  I'm good with this.  Three weeks is enough time between now and Christmas to allow me to enjoy the holidays without having too much anxiety over it... and it is close enough to New Year's that if I am starting to break down I have a worldwide excuse to let loose and blow off some steam on New Year's Eve before I begin picking my cuticles into a bloody mess and involuntarily tightening my shoulders until they scream for mercy. 

Ty is doing well.  The Etoposide isn't dragging him down too much - but he fights me TOOTH AND NAIL twice a day when I need him to swallow his Accutane (random, I know, but the high volume of Vitamin A/Retinol has been found to seek out and destroy new cell mutations - it's experimental but also proven to have some success). 

Accutane is an extremely goopy, sticky oil that is only available in a capsule because it won't mix with liquid.  Each dose for Ty is also such a small amount, that every bit of it it sticks to any type of syringe (which means I can't use Ty's belly tube because it sticks to the tubing and won't even wash off).  So, what I started doing is carving a hole in Ty's favorite flavored fruit snacks, poking a hole in the medicine capsule and squeezing the oil into the hole.  It worked well the last cycle (2 months ago) but this time he is over fruit snacks and ONLY eats pretzels.  I mean, that's it.  And... they have to be square shaped.  The Rold Gold "Snaps" to be exact.  Next week he will probably switch over to only yogurt drinks or string cheese, then only blue lollipops for a week and so on, but that's just to give you an idea of just how incredibly off his eating is.  Damn chemo.  It is a terrible toxin and I just can't wait until we can stop doing this -- or can I?  I am terrified to stop treatment just as much as I am dying inside every time I give it to him. 

My point is that he cries and fights and screams when I approach him with what we call his "vitamins" (technically, we aren't lying :)  The only plus side to the fight is that he really gets a good workout kicking and screaming and carrying on.  His left side is still so weak, but I do see slow and steady overall improvement.  You all know that i expected Ty to be walking by now, but the new reality is that we are looking at several months.  Maybe even another year before he is independently stable again.  But he tries, he improves every week, and he is so happy about any little progress that it makes the rest of us realize how his perspective on life is better than anyone else we know. 

To give you an idea of the progress he IS making... yesterday, in preschool, Ty sat at the table and he strung beads onto a pipe cleaner.  This was the first time I have ever seen him do this in his entire life.  You may remember he went through a couple of phases where he loved to make beaded jewelry when he was confined to his bed... but I always had to put the string through the hole for him.  He picked the bead, I helped him string it, then he would pick the next bead.  Yesterday, he did it 100% on his own.  It was a triumph and he has no idea. I was so happy for him.

Here are a couple of funny pictures I took on our way out today.  Ty is loving his hat, and Gavin looks like a gangsta. 




I love these guys.  Goodnight everyone, and thank you for all of your continued prayers and support.  XOXOX - The Campbell Family

Sunday, December 11, 2011

Remembering

Today is a national day of remembrance.  There is a worldwide candle lighting on the second Sunday of December every year to remember children who have died at any age of any cause.  Tonight, Lou, Ty, Gavin and I went to the NYU hospital to light a candle for Remy.  My dear baby cousin who lived for 95 days to teach us all how important it is not to take life and beauty for granted.  As Pete and Mary would say... to Relish Every Moment You have. 

So many friends were there to support Pete and Mary today.  I am so amazed at how wonderful people are.  I was especially happy to see an old classmate and soccer teammate, Kerrie.  She lost her sister ten years ago and she came with her parents and her husband to light a candle in honor of Remy and her sister.  Love was all around them and everyone. 

To quote from my amazing cousin Pete (www.ourlittleremy.com)

We are lesser because:
We have a permanent hole in our souls that will never be replaced.
We are greater because:
We became parents.
We are greater because:
We have grown closer together as husband and wife than I could have ever imagined.
We are greater because:
We learned what real love really is.
We are greater because:
We learned the true meaning of life.


I borrowed this photo from Mary's sister.  I lit a candle for Remy at NYU tonight, and right now I also have candles lit for Tanner Eichele, Ronan Sean Thompson and Angela Anna Leva (Fran, I didn't know, I'm so sorry). Below is a quote that I borrowed from Tanner's mom.

"If you know someone who has lost a child, and you're afraid to mention them because you think you might make them sad by reminding them that they passed away--you're not reminding them. They didn't forget they passed away. What you're reminding them of is that you remembered that they lived, and that, is a great gift." ~Elizabeth Edwards

 
This weekend I took Gavin with me to visit a WONDERFUL family who have done so much for us over the past year.  While I was there they asked me how old Gavin was.  He is two years and seven months but I automatically answered, "two and ten months."  I know I did this on accident because Ty was diagnosed at two and ten months.  I have been so preoccupied about that lately because Gavin is approaching that age.  I am sick over the idea that a baby so innocent and sweet as my little Gavin would have cancer.  I forget that Ty was so young when all of this started.  And even so much smaller (Gavin is WAAAY bigger than Ty ever was).  Why isn't there a cure yet?  It's just sick.

I should have gone to bed a couple of hours ago but I can't.  I'm in mourning tonight and it's a good thing.  Otherwise my house is quiet.  Ty has been absolutely amazing these days.  Even despite the recent switch to Etoposide in place of the Temodar he has been on.  In fact, the only side effect I notice right now is that he is sleeping very late - he wakes up after 9AM some days!! (can't complain there!).  The other afternoon I watched him, secretly, as he played by himself for almost 30 minutes.  He scoots across the floor on his butt (not walking yet), opens his toybox, and talks to his toys.  Just like I remember doing in my earliest childhood memories.  Oh..., how life is changing for me.  All is good.  So... very... good.   And I have each and every one of you to thank for that.  XOXO!  Good night. 
 

Wednesday, December 7, 2011

Christmas memories

We decorated our Christmas tree tonight.  It was so nice!  I wish I was able to get some better photos - these are terrible - but better than nothing.  Ty and Gavin hanging their first ornaments.  Ty chose a spiderman ornament (although I think he is growing out of his obsession over superheroes just a little) and I gave Gavin an extra sparkley one that he was eyeing.  Of course, it was broken just seconds after this picture was broken.  I saw it coming which is why it's so blurry; I was jumping up to grab it right as the photo snapped.  Ha!



I swear, almost half of the things I unpacked were gifts that we received last year, during our most difficult times.  There were so many beautiful things that I was so happy to unwrap under these much happier circumstances.  To all of you who were here for us last year - friends and strangers - I know I was unable to properly thank so many of you and I just want you all to know how grateful we are. 

I came across a card in one of the boxes that was written by one of my closest friends.  It was a simple, beautifully written note that was sent to console me.  I cried like crazy after reading that.  I don't know if they were happy tears or sad tears, I honestly don't, I just know that I am relieved and sometimes it takes reminders like that to help me exhale and relieve myself of some grief that was building when I didn't even know it. 

Last year, everything at Christmas was a "last".   I can't even begin to put into words what that feels like.  Ornaments that Ty picked out were purchased so they would be a reminder of the child we were going to lose.  I took endless videos.  I saved everything he drew on. We met with our at-home hospice nurse and I stared at her with confusion.  I thought, "What will she be doing when he is dying?  Will she be rubbing my back, whispering kind words?  I don't want her to!  I don't want her here!!  I wish she would get the hell out of here!!!"  There was a piece of me that hated that nurse.  I know that sounds so unfair and unrealistic, but I can't control the fact that I felt that way.  It was what she represented, I guess.

This year, I am hanging angels everywhere because that's where I feel them... they are everywhere.  I find more magic in the word "believe" because it has new meaning for me.  My eyes are open.  My son has beaten all odds and it is a miracle.  The tumors that existed in his spine last Christmas disappeared and there is no real medical explanation as to why.  The doctors simply don't know (but I do, thank you God).  I don't know what tomorrow will bring, but I am certainly rejoicing over today. 

XOXO

Monday, December 5, 2011

Those beautiful eyelashes

Ty has the most beautiful eyelashes.  It is something that people have commented on since he was two years old.  So long and pretty, I wish they were mine!  Well, they are mine, in a weird way, but I mean mine as in "on my face."  They are just stunning.  I am so happy they are still the same long eyelashes that he had before chemo took them away, before steroids made them freakishly long and curly, before chemo took them away again.  Today, they are just normal.  I was staring at them today and I realized that he has his real, true eyelashes back - and that they are so beautiful.  His hair is softer again, too.  He is looking really good.  Really healthy.

So, I am happy.  I am excited for Christmas.  Ty is amazing.  Gavin is amazing.  I am the luckiest person alive.  The only thing that's concerning is how tiny Ty is for his age, but who cares.  As long as he is cancer-free for the rest of his life, we can always make up for all of this growing that he is missing out on due to treatment. 

All of the kids Ty has known since he was born tower over him.  Including Gavin, who is almost 2 inches taller.  But I talked to his doctors about it and this is simply to be expected.  Kids don't grow on treatment or after radiation, and we will just meet with an endocrinologist when he is six or seven years old to discuss options.  It doesn't bother me right now.  I am just so happy he is here and he is not in pain.  I just can't wait for the day that he can get off the chemo.  That we can remove his mediport.  That he no longer needs to have GIANT FRIGGIN NEEDLES jammed into his chest every week or so.  It's just so beyond what any four year old should have to endure.  That's why he's SuperTy.  Preschool tomorrow.  Infusion on Wednesday.  Love you all, and good night. 

PS - I am LOVING the holiday season.  Is it always this magical?  I can't remember because I have been living in a fog.  The clouds are clearing and it is indeed the most... wonderful time... of the year!




Friday, December 2, 2011

Climbing down from the bridge

Thank you, Catherine.  You are right, I need to pull away from the caring bridge before I want to jump off again :)  I had a hard time sleeping this week, which was probably evident in my last post.  I've been consumed with thoughts of some kids who I've known who lost their lives to cancer.  I stare at Ty sleeping and I feel so incredibly lucky, and so guilty, and so scared of the possible reality that his cancer may come back.  I don't believe it will, I promise.  I do believe he is cured forever, and his amazing progress only helps me to know this is true; but it's only natural for my mind to race like it does.  In fact, the thoughts and visions I have of all the other children is spiritual for me.  As if I am somehow connected to these innocent beauties and I am lucky to know them.

Yesterday someone posted a long comment about her own struggles with infertility, and I appreciate how she shared her innermost feelings, I understand and can relate.  There is a post traumatic stress syndrome that is associated with such painful life experiences. I am healing, but I won't ever fully recover.  So thank you, for staying with me through all the ups and downs and always praying for my family.  I don't know what I would do without all of my friends and family, old and new, who have shared this journey with us.

Ty is doing SO WELL lately, I sometimes second guess whether or not I remembered to give him his daily doses of chemo.  This entire week he has been especially strong.  His bloodwork is good this week, and he is scheduled for his next infusion on Wednesday.  At that time, we will also switch his current chemo (Temodar) to start his next cycle of Etoposide.

He is becoming more and more physically active, and he is just increasingly HAPPY!  Less whining, less resistance, less anxiety and fewer questions about his next "pointy" (appointment).  He is sleeping very well with little or no medicine.  And, a lot of his hair on the back of his head started sprouting this week.  I thought it would never return because it has been so long since his last radiation treatment (4 months) but it finally looks promising.  I think the areas where there is permanent damage to the hair follicles will be relatively covered by his other hair if it continues to grow in.  I am so happy for him!  He doesn't care, but someday he might. 


Ty went to preschool Tuesday and Thursday and he was so happy to be back after all this time.  In fact, he didn't want to leave!  He cried so much on the way home Tuesday I had to pull the car over.  He is participating more in class, and he is making friends.  The girls, especially, are so cute.  They have this natural instinct to nurture, even at three years old.  When I get up to help Ty walk, they run over to hold his hands, too.  They want to help.  They want to sit next to him and help him reach for the paint or the crayons.  It is just so stinkin' cute. 

I feel with all my heart that Ty is going to grow up to be an amazing man someday.  He is so special, I am already so proud of the little boy he has become.  May he continue to make me beam with pride, so much so that I annoy my family and friends with my bragging :)  He will do great things.  I believe he is still here for reasons bigger than I am meant to understand. 

Tuesday, November 29, 2011

Making Magic


This is for you, Colleen.  You never let me stop believing, even when we were given the worst news imagineable.  You made all sorts of magic for me and for Ty, and you still do.  Thank you for your pep talk yesterday.  Some day I will take your advice and let go of the fear, but I just can't do it yet.  I try!  Keep sending me your magic and it will happen :)

Most of my sleepless nights revolve around the lingering fear.  In addition to fear, I have a heavy guilt for being happy over the past four months.  At night, I pore over stories on facebook and caring bridge.  I know I promised I wouldn't do this anymore, but I keep doing it!  I guess I am part of a world now that I can't escape and I don't want to escape.  My eyes have been opened to just how many children are suffering with pediatric cancer and I need to know their stories so I can think about them and pray for them.  I don't connect on a personal level because I am simply not strong enough to help, but at least I feel like I'm doing something simply by being aware.

When I hear about a child's recurrance after remission, I begin to drown in the greatest depths of my fear.  It's my worst nightmare.  When I hear about a family's devastating loss, I am hammered with tremendous guilt.  And anger.  I get so angry.  Kids just shouldn't get cancer.  There needs to be more research, more treatment options.  When is a cure for cancer going to be found, this is ridiculous!?!?

These feelings I harbor are fierce and they are vicious.  I am so blessed and so lucky.  Sometimes I need to remind myself that these days are real, that Ty is getting better.  I lived in a burning hell, but somehow I got out.  My baby is still here with me and I believe with all of my heart that he will live a long, happy life.  Reading about all of those who have lost their own beautiful and most special child makes me realize, "How dare I ever feel sorry for myself!  For what I've been through!"  Who cares!  I'll always hate that Ty had to suffer, but who cares about my sorry self.  I am a better person for all of this.  If I were to lose him, I don't think I could ever be happy again and I would simply want to die.  The constant worry or fear of recurrance sits in my stomach 24 hours a day. 

First and foremost, I despise the thought of Ty having to suffer like he did ever again.  I worry about that more than I worry about how I would survive without him.  I have told God that he can take my arms and legs and abandon me in the woods to live out the rest of my life alone and helpless... I wanted it, I begged for it... as long as Ty could survive and be happy again.   I guess it was easy for me to make that plea because if I lost him, that's what my life would be like anyway. 

Tonight I am praying for all of these bereaved parents.  How incredibly sorry I am. 

Monday, November 28, 2011

Improved physical strength

Since Ty has been on daily chemo - our new life over the past four months - I simply can't figure out the "rhythm" of it all.  My instincts are always challenged because I don't know what causes Ty's bad days versus his good days.  I can't figure out why one day might be so much better than the next.  Today was a really, really good day.  I hope tomorrow follows suit, but I wouldn't be surprised if it doesn't.

Today, Ty had an appetite.  It was wonderful! Considering he ate nothing but rice puffs over the past three days (which are only 25 calories per serving) I was so excited when he announced that he wants an ice cream cone this morning.  By 11:30 I decided it was close enough to lunch time to get ice cream.  But first, I told him, he had to have some lunch.  I never thought he actually would, but I was trying to plant a seed.  We ventured off to The Red Rooster Drive-in (eat your heart out, Nancy) and I was completely shocked when he said he wanted to eat a hot dog first.  He had two bites before he dived into the french fries dipped in ketchup.  After one french fry (it takes him five minutes to eat just one), he moved on to one and a half chicken nuggets before saying.. "Hey!  What about my ice cream?"  One vanilla cone with rainbow sprinkles, please!  He ate about 1/6 of it.  I know this doesn't sound like much, but OMG - this is a HUGE meal for Ty.  He never eats like this.  I was so excited.   This continued until he went to bed tonight.  He ate more chicken nuggets for dinner (I ordered another one "to-go") and some corn on the cob.  He snacked on sour patch kids and nerds.  He had animal crackers for dessert.  It was amazing.

His physical therapist came at 4PM for their regular session.  I was upstairs at the time, but I was listening the whole time in case she needed me to join in during therapy.  Instead of the usual resistance, Ty was in great spirits.  He had a great day with his therapist because he didn't fight her on everything.  He actually stood for almost 10 seconds without any support, and he took two baby steps toward the couch 100% independently.  These are both very big "firsts" for Ty, and I was almost in tears.   Lou and I are always so concerned at how slow he seems to be progressing, but today was the opposite.  I was so impressed.  Later tonight, I let go of him and had him standing on his own for a few seconds.  He was scared, but afterward he said "Call Stephanie (our wonderful PT)!  I want you to tell her I standing!"

Like I said, tomorrow may be the complete opposite.  It happens all the time and I don't know why.  He is scheduled to return to preschool tomorrow after several weeks away and I am really hoping for another day filled with energy.  I want him to be excited to return to school - I know I am. 

Goodnight, everyone.  Thank you so much for your love and prayers. 

Sunday, November 27, 2011

JETS Jets Jets Jets

Today, Ty went to his first NFL football game.  The Jets, of course!  What a way to end this incredible weekend.  We have more and more to be grateful for with every passing day.  Today was a day that will live in our memories forever. MetLife (as in, MetLife Stadium!!) awarded Ty complimentary tickets to the game. Little did we know what incredibly special arrangements the company had made for us. We had the time of our lives.

In fact, a great friend and past NYC roommate of mine recently joked that Ty is going to have to "get over himself... we get it... he's great..."  Shep, you are right.  I pray that some day I'll have a hard time explaining to Ty that this is not normal and should not be expected.  :)

Here he is, once again, being a super little badass psuedo-celebrity.


First, MetLife provided us with passes to stand on the sidelines pre-game.  When we picked up the tickets we didn't actually think our feet would be touching the same turf that the JETS play on... but indeed it was!  Defensive players Marcus Dixon, Sione Puoja and David Harris came over to talk with Ty during their warm-ups.  So did Defensive Assistant coach Jeff Weeks (what a nice guy) - he said "let's see if we can win one for this little guy."  Which, by the way, they did!  It was a nailbiter, but the Jets won!

Personally, I was eyeing Mark Sanchez the entire time (what can I say?) but he was too busy warming up for the big game. 


Yes, that's Mark Sanchez

However, my sister-in-law's favorite Jets veteran, Wayne Chrebet also stopped by to talk with us.  Wow, was he the most thoughtful man - and so cute.  Before the Jets, he had played for Hofstra University on Long Island so of course I was smitten, too.  He asked a lot of questions about Ty because he is an advocate for pediatric neuro-disorders.  He was so thoughtful and kind.  Here he is talking with Lou.  He might be the ONLY football player we saw in person who didn't absolutely TOWER over us. 


  
Once the game began, we were treated to amazing seats at the 50-yard line and full access to the coaches club.  It was outrageous.  There was tons of food, and there was even a candy bar that had everything Ty could ever ask for.  It completely made his day.  Here he is with a selection of the candy he was eating (smarties and gummy bears).


Since he is only four years old, I often worry about whether or not he is going to have a break down and start whining to "go home."  To my surprise, he enjoyed every minute and watched the entire game.  And it was a really, really good game.  We all enjoyed it without any major issues.  At one point I had to take him for a walk around the stadium, but I didn't care because I was happy to see the new stadium (I haven't been to a game in over five years).  It is so nice.  Very different from the old stadium I remember. 



Ty has been through so much.  I cherish moments like these when he gets to feel special.  He is our most precious gift.  I try to enjoy every single moment; every sound and every breath that comes out of his mouth.  Oh, and could the weather have been more perfect?  I don't think that was coincidence or luck, either. 

Thank you to everyone who helped make this day so special for Ty (Catherine - I love you so much).  Goodnight everyone.  I hope you had a wonderful holiday weekend filled with blessings. 

Saturday, November 26, 2011

The dishes can wait

My house has been turned upside-down since Wednesday.  I am not usually comfortable with this.  However, over the past few days I've tried to let time with all three of my boys take precedence over ignorance in the sink.  We played with Play-doh in every room of the house, we finger painted, we did sticker art on the floor (and our faces), we went to the tree farm and "tagged" the tree we will cut down in a week or two, we reintroduced the Elf on the Shelf to Ty and Gavin, we ate late lunches, even later dinners and dessert for breakfast.  Right now I'm surrounded by a sea of toys while Lou and I watch Two and Half Men.  Who do we think we are?  Just watching senseless TV and unwinding with a glass of wine?  This is great!!  These carefree crazies probably won't last past Monday, but I am loving it while it does.


It should always be fun like this.  Given all we have been through, I should be living every day to its fullest, but the truth is...  I still get totally stressed out and caught up in the small stuff.  I don't want to.  Tonight I was listening to Gavin singing in his crib while reading facebook updates from several cancer families.  So unfair.  It's why I remembered to focus this post on how lucky I was to spend Thanksgiving weekend at home having fun with the boys. 

So, even though I forget to heed my own advice sometimes... think of this adorable picture of Gavin and try to remember that the dishes can wait. 

PS: To Marilyn - who has done so much for me and my family.  I hope you had a wonderful, fabulous birthday. 

Friday, November 25, 2011

Thankful for so much...

Handsome boy on Thanksgiving


We are all so thankful that we didn't have to spend this Thanksgiving in the hospital again.  What a relief!  Ty's latest cultures are still negative, too, so we resumed his chemotherapy this morning and he is doing well. 

We spent the day at Aunt Debi's house yesterday, and during the ride home I asked Ty once again to tell me what he is thankful for.  He said "presents".  No surprise there.  Then, he really surprised me.  He said, "I'm thankful for my pointies".  Ty calls an "appointment" a "pointy". 

"You mean, you are thankful for your appointments?"
"Yeah!" he said with excitement.
"Your appointments with your doctors and nurses?"
"Yeah!  I'm thankful for my pointies, too!"

I realized at that moment, that he gets it.  He knows how serious cancer is, and he knows how important his visits with the doctors and nurses are.  Even though he hates being there, and it hurts, he is still grateful.  He is becoming so smart and so mature in his four short years.  I am so proud.  And, of course, eternally grateful. 

This year, I am thankful for:
- Ty's miracle
- my family, always. 
- 2 consecutive clean scans.  Keep 'em coming!
- everyone who reads this blog or supports Ty otherwise
- your countless prayers, well wishes, thoughtful gifts and positive thoughts
- Amela, our beloved babysitter
- the influence Ty has had on others so his suffering holds more purpose
- Daniel, Tom, Sue, RaeAnn, Christine and Allie - Ty's loving nurses
- Dr. Kevin DeBraganca, Dr. Jeff Greenfield and Dr. Vijay Ramaswamy, also Mary, Maria, Cheryl, Vanessa and all of the pediatric neuro-oncology team at MSKCC
- countless meals from my friends and neighbors, I don't know how my family would have survived otherwise :)
- The Guardian Brain Foundation, Make a Wish, The Robert Manzoni Foundation, The Michelle O'Neill foundation, Friends of Karen, Cookies for Childhood Cancer, The Iron Riders of NY and so many others who have given so generously
- the support of our community, including "Ty's lollipops"from our friends at the bank, special care from our local pharmacist, Get Well cards from the students at Pawling elementary and the "pajama day" party for Ty at the Sunshine School
- all of the special gifts that have been sent to our home - both for Ty and for me.  We will truly cherish them, always
- the words of encouragement posted to Ty's blog and his facebook page
- the Fordham football team, for adopting Ty through the Friends of Jaclyn foundation
- the most amazing, unique and memorable experiences that have been arranged for Ty over the past year (i.e. meeting Spiderman and Derek Jeter!! a fly-by of Manhattan during Ty's first flight!! an anonymous delivery of 365 balloons on his anniversary!!)
- reconnecting with old friends, and making so many new ones around the country
- spending this Thanksgiving home with family, and preparing for Christmas for a healthier, happier Ty who is NOT on hospice care

Wooo Hoooo.  How Thankful we are!  Lou and I spend a lot of time today reflecting.  We read the blog entries from November and December last year - some of our darkest days - and we cried about the pain and suffering that we all experienced.  Especially Ty.  We cried for all of the other children we encountered since last August.  We cherish every single day and we are grateful for every smile, every word, every mess our kids make. 

Written below is Lou's beautiful Thanksgiving poem :)


Thankful - by Louis Campbell
I am thankful he is alive
I am thankful he can hold his head up
I am thankful he can breathe normally
I am thankful he can see straight
I am thankful he doesn’t have head pain
I am thankful he can wiggle his toes
I am thankful he can eat and drink
I am thankful he is home
I am thankful he is smiling
I will be thankful when he can walk
I will be thankful when he can go to school by himself
I will be thankful when he and his brother can wrestle
I will be thankful when he graduates
I will be thankful when he becomes a father
I was thankful yesterday
I am thankful today
I will be thankful tomorrow

Wednesday, November 23, 2011

A false positive. WHEW~!

What a crazy week this has been, and it's only Wednesday.  As I mentioned, Ty was running a fever on Monday.  His white blood cell count was elevated, specifically his ANC which is usually more indicative of a bacterial "bug" rather than a virus that might be causing the fever.  Given we were on a plane home from Mexico on Sunday, if there was something in the air it would certainly make sense that Ty would catch it given his poor, broken down immune system.

So, of course, I brought him into the city for cultures and an exam on Monday afternoon.  He was given a broad anti-biotic that is geared toward a wide range of bacteria, and we went home.  It was a long day spent in traffic and in between the busy hospital walls.  Ty was a trooper.  

The next day (Tuesday), we had to return for his chemo infusion (Avastin - which he gets every two weeks).  He was 100% better.  No fever for over 24 hours, he was feeling great except for a small bout of diarreah.  I was warned the day before that he would probably have symptoms in his digestive system if he was fighting any sort of bacteria in his system.  The cultures, which were drawn 24 hours before, had so far been clear (meaning, nothing grew back on the blood samples) so no one suspected that he might have an infection in his bloodstream.  Another long day at the hospital -- the 3 - 4 hour drive round-trip was a bit more exhausting the second time around -- but we had some nice quiet time together, we shared a lot of smiles and jokes, we read books and played games while waiting in the hospital and it was a pretty good day regardless.  We kept the needles in his mediport overnight so the only real torture for Ty was having them removed at the end of the day.  The nurse was great, she did it super fast and careful, and after a few tears we were on our way.

This morning our phone rings at 7AM.  Immediately, I know it must be his cultures.  He has an infection, doesn't he?  The familiar accent of the German fellow on the other end of the line didn't even have to continue to explain... I know the drill.  I waited to talk to our trusted nurse practitioner to get an idea of what to expect before leaving so I could prepare.  No surprise to us, she said a 72-hour hospital stay was most likely in our future.  No Thanksgiving again this year. 

Lou and I spent the morning packing up for a hospital stay.  We called our families and "cancelled" Thanksgiving.  We figured out where Gavin would be staying and packed up all of his essentials.  It was depressing, but still we were/are thankful.  Thankful that Ty was feeling well despite the positive culture.  Thankful that he hadn't had a fever for almost 48 hours (a very good sign when fighting infection).  Obviously, most thankful that his hospital stay wasn't tumor-related.  My boy is still cancer-free which is way better than his prognosis was last Thanksgiving.  Not a single oncologist would have believed Ty would even be with us this Thankgiving.  So yes, we are beyond Thankful.

I don't typically mind the drive into the city.  After living there for almost a decade, I am very comfortable there and often have thoughts of what it would be like if we never left for the burbs.  There is so much that I miss about it.  What a great life I had there.  Not as good as it is now, thanks to my amazing children, but still... it was great.  Anyway, my point is that on the contrary, today I absolutely dreaded going into the city.  The Wednesday before Thanksgiving?!?!  The absolute WORST day travel day of the year?!?!  The good news is, I was lucky enough to make both a traffic-laden trip INTO the city, as well as a traffic-laden trip HOME today.  Let me explain :)

It takes time for bacteria to grow on cultures.  And even more time for the lab to figure out exactly what kind of bacteria is growing.  At the time we were called, the team saw both "rods" and "cones" growing, which is likely indicative of a staph infection.  As some of you might remember, Ty has a very, very complicated history of several very serious staph infections in both his bloodstream (MSSA) and his CSF (MSSA, MRSA, Candida - not a staph but still!, etc).  So, we don't want to take any chances with this.  However, by the time we arrived at the hospital the infectious disease team was able to better identify the type of staph that was growing, and it turns out that it was not nearly as serious as the bacteria we have dealt with before.  In fact, they felt that it was most likely a contaminated sample because the type of bacteria they found usually sits on the skin and is very rarely found in the bloodstream. 

Long story short, we were given a pass to go home.  At least until tomorrow.  They drew more cultures today and they will be monitored.  If anything grows on the new cultures over the next 24, 48 or 72 hours, we will have to return... but Lou and I were happy to take our chances and we smiled in traffic the whole way home.  NO! Thanksgiving will NOT be cancelled this year :)  Tomorrow I will post a list of the things I am most thankful for.  I will try not to bore you too much, but I think you know it will be a very long one.  It's been a long day and I think I am actually going to fall fast asleep the second my heads hits the pillow.  Which is right about now... the wine helps :) 

XOXOXOXO.  HAPPY, HAPPY, HAPPY THANKSGIVING!! 
PS - topping my "thanks" list tomorrow will be all of you, and your neverending prayers. Love you all so much.


 

Monday, November 21, 2011

Uh oh. Fever.

Ty was running a low grade fever this afternoon.  For anyone else, it would have meant Tylenol and maybe the rest of the day in bed.  For a cancer patient in treatment, it means a trip to the hospital.  These are the days I wish we lived closer. 

I was so worried about him for a while.  He was just so lethargic which always raises concerns about hydrocephalus or shunt malfunction.  I had tremendous guilt knowing he probably contracted a virus or something on the plane.  I called his team before leaving and asked for permission to give him Tylenol before the ride in because he had been whining and moaning in his sleep non-stop for three hours already.  Although they were reluctant because they wanted to see what he would peak at (at the time he was less than 101), they said it would be okay.  I'm so glad they allowed it, too, because by the time we arrived he was returning to himself again.  His eyes were still glassy and he told the nurse he still felt "yucky" but that he was definitely "feeling bedda".  He hadn't eaten or drank anything all day so they immediately accessed his mediport and put him on fluids.  This requires two huge needles through the skin in his chest - which he does NOT handle well - but all I could think about is how nice it is that he only has to suffer through this procedure an average of once a week now, instead of what he used to endure.  They ran all sorts of cultures (results from which take at least 24 hours) and they checked out his blood counts. 

His regular doctor isn't in clinic on Mondays and the one we saw today doesn't check on Ty frequently.  I prefer to only see Ty's primary doctor because I love him and he is familiar with Ty's complicated history, but I still liked today's doctor a lot because he is very thorough.  It can get overbearing, but at the same time I prefer when no stone is left unturned rather than being rushed out the door.  I have had way too many bad experiences when assumptions are made.   The doctor told me that Ty is truly an amazing kid... that he doesn't see many kids like him that can really communicate how they are feeling and converse with the medical team.  Ha!  I would have never thought that Ty gives that impression with the way he usually shuns everyone who tries to talk to him, but hey... I know he's amazing and I'm so glad he does, too.  :)

His CBC was amazing.  Like that of a perfectly healthy kid!  The only thing that indicated a possible infection was the fact that his ANC (his neutrophils - which are the bacteria fighting white blood cells) were very high.  That elevation shows his body was/is fighting something, but the team wasn't too concerned.  They gave him a 24-hour IV antibiotic and we have to return tomorrow for another CBC, another dose of the antibiotic, and for his regularly scheduled infusion of Avastin anyway.  In the meantime, they sent us home on a pump so he basically gets his IV fluids over night without any hassle.  He was feeling so much better after getting those fluids, he even asked me to stop for a corn on the cob at the KFC drive through on the way home.  It's the only thing he ate today, but I'm just so happy he ate.  Whatever the King demands....

Tomorrow will be another long day of back and forth at the hospital.  Due to the fever, I am going to skip YET ANOTHER day of preschool (so disappointed), but at least I can get in and out of there earlier which means I won't have to cancel his occupational therapy in the afternoon.  Hopefully.

Ty is sleeping soundly now, and my fingers are crossed that he can maintain that throughout the night.  I kind-of already know this is out of the question.  When the Tylenol wears off, he will most likely be awake and uncomfortable.  With my luck, those types of things usually occur around the time that I am finally dosing off because of my endless insomnia.  So, perhaps you will hear from me again around 3AM - if he allows me time to go online during Max and Ruby or whatever other Nick Jr. program he chooses to watch.  He probably won't because when he's sick like this he prefers I cradle him on my lap :)  Lucky me, really.  I love him so much, I don't mind our alone time in the middle of the night anyway.  As long as he isn't suffering. 

When we left for the hospital I brought my emergency overnight bag and expected I would need it 100%.  In fact, I cried a bit because I was afraid we would be spending our second Thanksgiving there in a row.  When I quickly searched through the essentials I was happy to see that it still had a few mini bottles of wine left in there, though ;)  Of course, I was even more happy that I didn't end up needing to use it.  I can't remember if that has ever happened before.  If I was prepared to stay inpatient but then I didn't have to.  Oh, how things are changing slowly but surely.  Thank you, God.  And thank you, everyone, for keeping tabs on our special boy.  He is such a love. 




Sunday, November 20, 2011

Healing in Mexico

Home sweet home.  It was a short trip, but well worth it.  Lou and I never expected Ty to have as much fun as he did.  At home, he is very, very reluctant to get out of his comfort zone.  He would hardly ever set foot in a pool unless he was forced to, he doesn't like to be outdoors (especially in the sun since his skin is so sensitive), and he doesn't like crowds of people he doesn't know.  We came prepared with DVDs so he could watch them outside on a lounge chair.  Books to keep him occupied.  A few favorite toys.  We thought we have to bend over backwards just to get him to sit outside with us for more than 10 minutes at any given time.  Boy were we wrong!  Instead, he was saying "More swimming! More sandcastles!  More walking!  More FOOD!?!?!"  He had at least one filet mignon every day - my prince.  I cried so many happy tears.  He was like a new kid.  It was another incredible turning point on his road to recovery.

Several things happened during our trip that could be considered coincidence, but I think otherwise.  We arrived late the first night, and Ty's star was shining so bright down by the ocean.  We were told there was a long streak of terrible weather before we arrived, but we had nothing but clear blue skies every day.  One day, there was even a cloud in the sky in the shape of a T!!  I have proof and I will post the photo soon :)  Another day we sat near a family that had children the same age and I noticed the woman was looking at Ty a lot (most people do, because they are curious. I don't mind at all).  It turns out I sat next to them again at dinner and she began asking me about him.  She happened to be a radiation therapist who knew his hair loss must have been a result of radiation, but it took her a while to ask me.  She ended up reassuring me about some things that never quite returned to normal since Ty completed his last course of radiation therapy and she made me feel so much better.  She doesn't work specifically in pediatrics, either, and I am pretty sure she and her husband left dinner that night with a new love in their hearts for Ty Campbell, and thanking God for the health of their own two beautiful babies. 

All through this vacation, I couldn't help comparing it to our Make A Wish trip to Disney last year.  How different it was!   Our Disney trip was the most memorable and forever will be, but that's probably because we were told his condition was terminal.  At the time, his tumors were growing so fast we were told to prepare for his passing in 6 weeks or so (how any parent is supposed to do that is beyond me, but okay).  Every moment of our trip to Disney was a first and a last.  Ty's first time on a plane.  Ty's first time meeting Mickey Mouse.  Ty's first time seeing animals at a zoo.  Ty's first time at an amusement park.  We were on a mission to "do it all" and I would save every little thing I could get my hands on (you should see his "keepsake" BOXES - yes there are several of them filled to the brim).  I would shove my face in his dirty laundry and relish in his smell.  He was on so much morphine and such high steroids, none of us slept a wink for months and months and months.  We just wanted to do, do, do and give Ty everything we could. 

On the contrary, this trip to Mexico was a vacation focused on healing.  Ty was 100% free of all medication (we will start up his daily chemo again tomorrow, but couldn't risk it while being away).  We didn't rush, we didn't plan, we just tried to enjoy Ty and Gavin and enjoy the beauty of where we were.  The only non-relaxing activity Lou and I indulged in was a jaunt on waverunners and all I can say is "YAAAA HOOOOO!!!!!"  I drove that thing full throttle, jumping over wave after wave, for a half hour.  My hair whipping behind me, I yelled and laughed out loud the entire time.  It was so liberating!  I felt so happy, finally, and so aware of how beautiful life can be for the first time in a long time.  I am so blessed.  Every living thing on this beautiful earth is a miracle and God is indeed good.   Goodnight everyone.  More tomorrow.

Oh... and I know that Gavin is confused about the "kitty" pool because when we were walking by it after dinner in the dark, I reminded him that it was the "kiddie" pool he had been swimming in earlier that day.  He said "kitty pool?"  "Yes, kiddie pool," I repeated.  Then he started crawling and meowing like a cat over and over.  He had that mixed up the rest of the trip - so cute! 

Friday, November 18, 2011

Making memories in Mexico

I have so much to write about, but my laptop has been taken over by Ty and Gavin.  The hotel here in Riviera Maya doesn't have a DVD player, so they use my computer to watch their movies which makes it impossible for me to get online to post an update. 

Our vacation has been wonderful.  Better than we could have ever imagined.  I will share a full update tomorrow - hopefully we will have internet during our flight home.  In the meantime, here are some photos so you can see how much fun we've been having.  This trip has been so long overdue.

Building sandcastles at the beach

Swimming in the kiddie pool (or, according to Gavin, the "kitty" pool)

Drinking strawberry smoothies at the kid's bar

This is my favorite so far!