Tuesday, July 31, 2012

We have liftoff!

Just one tiny update since yesterday.  Ty lifted his feet off the ground for the first time since February and I am so excited.  He was assisted (with his PT supporting his leg at the knee) but regardless Ty was lying on his back and able to pull his foot about six inches off the ground.  That is a very promising sign of more progress to come.  SuperTy is super indeed! 

Monday, July 30, 2012

Tired Monday

I spent the weekend catching up with my best friends in the whole world.  It was the most fun I've had in a long time, and it was looong overdue.  Needless to say, I'm not very excited about Monday.  Is anyone, ever?  I am feeling the late effects of the weekend, coupled with the insomnia I suffered from last night.  Why is it that I can never seem to sleep when my body needs it the most?  At least I can't stop laughing at this ridiculous picture of me that Colleen sent me from her phone.  It's so blurry because we were dancing and laughing like crazy :)  We haven't been out like this in so long, yet whenever we all get together it's as if nothing's changed.  I felt a little guilty until Ty told me this morning, "I had so much pun with Nana while you were gone."  I'm so glad we all had "pun" this weekend. 


Ty has been having headaches, but I can't determine if he is experiencing muscle pain in his neck because he is working so much harder to turn his head and hold it upright, or if he is having genuine head aches.  I hope it is just muscular.  Not that it makes it any easier for Ty, but it certainly means I can worry a bit less when he complains about it.  This is part of the reason why I couldn't sleep last night.  My mind is always racing.  Always worrying.  If I'm not in a panic over the immediate future, I am worried about what's in store for Ty down the road.  Most days I am filled with hope and confidence, but fear is always lurking in the shadows and when the lights go out it finds me. 

We are back in oxygen therapy this morning and he will have a full day of PT and OT when we get home.  I was counting the days on the calendar today, and if I'm right Ty will complete this round of oxygen therapy by next Thursday.  Woo Hoo!!  This week we have to go to Sloan Kettering for an Avastin infusion, so if we skip oxygen that day then we will finish up on Friday.  Regardless, two more weeks an we are done, done, done!  I was told that after 60 treatments in an HBO chamber, the patient reaches maximum benefit.  When I asked about what we should do if he begins to decline after we reach that maximum, the doctor told me that it isn't likely.  If Ty was to require additional HBO treatments, it wouldn't be for at least a couple of years.  I was happy to hear that!

My nieces are visiting with us for the week, and I am so happy to have them!  Gavin and Ty will have so much fun.  I will have to take a lot of pictures.

I have to wrap this up already because Ty's treatment is almost done.  Hoping for a better night's sleep tonight! 

Thursday, July 26, 2012

The sky is the limit

Ty's PT used that phrase yesterday and it was music to my ears.  Ty has been doing so well this week, it makes us all so happy.  Some new developments on the PT side:
  • When I'm carrying him, he is able to lift his head off my shoulder slightly.  It only lasts a second or two, but that is only going to get stronger
  • He has more control over his legs and can wiggle his toes ever so slightly on command
  • He pooped without a suppository twice in two days which just means increased strength
  • He was able to sit in my lap for a HAIRCUT - woo hoo he looks amazing - and I noticed that his back/stomach muscles are getting stronger.  He was sitting up much straighter than just last week (of course I was supporting his head and neck the entire time, but the improvement is significant)
  • Lying on the floor, he rolled from his side to his back (with assistance, but just having that motion in his hips and shoulders is HUGE)
  • When laying down, he can turn his head pretty well from side to side (and without much pain)
He is making great strides.  It is a long and winding road ahead, but like Colleen said, we have all the patience in the world for Ty. 

Love for Ty, all the way from Italy:
Love for SuperTy is spreading across Italy.  Two great friends and Ty supporters recently prayed for Ty during their vacations in Italy.  One in Rome and Vatican city, where she had rosaries blessed for Ty and Gavin (thank you Kathleen!), and another at the Hermitage for St. Francis on Mt. Subasio. 

My great friend, Catherine, took an incredible vacation biking along in the Italian countryside for over a week.  When she shared these photos with me I cried at the thought of her praying for Ty at such a beautiful and holy place.  I love that her thoughts of love read "Praise the Lord for giving Ty Campbell the strength to be Our Little Fighter".  I've been meaning to share these for a while :)





Tuesday, July 24, 2012

I don't really have many updates this morning.  Yesterday was a quiet day.  We didn't go to oxygen therapy yesterday because of the belly tube incident, so it was even harder to calm Ty down today after a three day weekend.  He just doesn't want to come here anymore.  I'm sure he will be fine once treatment is over for the day. 

I was just looking for a photo and came across these adorable ones from March 1st.  This was the day before we ended up in the hospital for mysterious headaches.  Looking back on these pictures, I can see that Ty's left side was weak, but who would have ever guessed that just a couple of weeks later he would become paralyzed from the neck down - overnight. 


Ty Louis Campbell, March 1, 2012

I'll never forget that night.  We were sleeping together in the hospital bed, not sure what was wrong with him.  Around 4 in the morning I felt his right arm slide down from being wrapped around my neck.  I went to pull his arm back around me and was completely taken back when I felt how limp it had become.  A couple of hours later the neurosurgery resident came in to check on him and while he slept I told her how I was worried because he seemed so weak - and allover.  Her reaction was calm, but I could see in her face that she knew something bad was happening and she was helpless against it.  We all were. 


Soon Ty will be sitting up like this again.  Soon he will wear those adorable underpants again, too.  In fact, just yesterday he tried sitting on the potty again and it went pretty well.  He called for me from across the room and said he had to make a pee pee.  When I returned to the room with a urinal he said, "I fink I'm weddy."  "Okay, you're ready to go pee pee?" I said.  "I weddy for the potty!" he answered.  It was hard to balance him on the seat since his trunk strength is still so comprimised, but I think he felt good, like a big boy again, to be sitting there like that. 

I'll sign off today with another adorable photo from around that same time, although this was taken after the headaches and hospital visits began.  Something was wrong, but we couldn't figure out what.  I love how he is making the peace sign.  He'll do that again some day!



  

Monday, July 23, 2012

Always an adventure

This crazy life of ours... at least it's not boring! We had an incredible weekend filled with fun and topped it off with a minor medical emergency. The usual. I'll save the details about the medical incident for the end, because I don't want to damper all of the good updates. 

The Miles for Hope 5K in Riverside Park was a huge success. Thanks to all of you, our team was the largest there with 42 runners, we raised the most money (+$15,000 - more than $5,000 over our goal), and you made me the number one fundraiser among all individuals running. Team SuperTy made quite an impression. When they asked Ty to be an ambassador for the event, I don't think they expected to be flooded with so much love and support. Thank you all from the bottom of our hearts.

After the race, I was asked to say a few words about why the 5K fundraiser was so important to us. It is better in written form, without all of my umm's and you know's so I pasted it below to explain why we were so excited to raise money for this cause.  I am waiting for some better photos of Team SuperTy from the photographer, but here is a shot of our team and the team for Weill Cornell Children's Brain Tumor Project trying to get together for a picture.  My nephews are up front, seven and eight years old.  They finished the 5K in second and third place in the "under 9" category.  I'm so proud of them!



Here's a picture of Ty at the race.  He was so sweet the entire day.  He's doing really well lately - physically and emotionally.  This makes all of us feel as happy as this :)


And here's the gist of what I spoke about at the event:

On August 11th, Lou and I heard the words that no parent should ever hear.  "Your child has cancer."  Ty's first brain tumor was discovered at the base of his skull pressing on his brainstem.  He was two years and ten months old. 

Of course, the first thing we did was research.  We were constantly online looking for information on the best treatment protocols for Ty.  Searching for case studies of other children who have beaten the same type of cancer, grasping for information on how to win this battle.  The problem with brain tumors, especially in pediatrics, is that every case is so differentiated.  The majority of all pediatric brain tumors are rare and unique.  We found little information on proven protocols to treat Ty's rare brain tumor type because it simply doesn't exist yet. 

The first year in treatment was brutal.  He endured 16 surgeries, almost 200 nights in the hospital, infections and unsuccessful chemotherapy regimens that were destroying our perfect baby boy.  Then, in May of 2011, we heard the words even more devastating than the discovery of his tumor in the first place.  Our beloved oncologist told us "there's nothing more we can do." 

Ty's cancer had metastasized into his Cerebellum.  Our hope was deflated, our were hearts broken and our minds were lost in anguish until Dr. Greenfield of Weill Cornell came to us with a surgical option.  In a situation where it would have been much easier to opt out, he showed how vested he is in this fight.  He told us, "I think, with surgery, we can give him a great summer."

Well... two great summers later, Ty remains stable with no evidence of disease and we are forever grateful for the surgery team at Weill Cornell for opting to save his life.   

Ty's recovery has been nothing short of miraculous.  He couldn't be in better hands.  Up until this past March, he was attending pre-school, scooting around the house faster than lightning and learning to walk again.  Unfortunately, he has since suffered another tragic setback as a long-term effect of the harsh treatments we subjected him to.  He suffered post-radiation brain bleeds, swelling and necrosis to the brainstem area that has left him completely paralyzed since April. 

But that can't keep Ty down.  Why else would we call him SuperTy?  He is improving every day.  Again he is beating the odds with his miraculous recovery.  However, this experience has opened our eyes to how important it is that safer, less invasive treatments are discovered for our children.  Which is exactly why we jumped at the opportunity to be part of The Children's Brain Tumor Project at Weill Cornell.  We believe they are going to do amazing things for rare pediatric brain tumors. 

Ty Louis Campbell is here today with no evidence of disease thanks to the grace of God, thanks to his own strength and unbreakable spirit, and thanks to Dr. Greenfield and his team for never uttering the words, "there's nothing more we can do."

THE BELLY-TUBE INCIDENT
I mentioned that we ended the weekend with a medical emergency.  Well, last night Ty was giving us a very tough time about going to bed.  He was so tired, but he just wouldn't give in.  Lou and I were losing our patience with him because we so desperately needed to rest ourselves after a long, exhausting weekend.  Finally, he was ready for bed.  We were so excited that we pulled off his covers to lift him off the couch before realizing that the extension from his belly tube was sort-of wrapped up in it.  His entire Mic-Key pulled out of his belly. 

This is the best illustration I could find so you can understand how it works.  The button sits on top of the skin on his belly, it goes through his skin, muscle and the wall of his stomach, where it stays in place by a bubble that is inflated with saline once inserted through the hole.


Then there is an extention tube that attaches to the button for the feeding (see below).  This is what got caught up in his blanket.  The entire thing pulled out of his stomach, leaving an open hole with belly juice pouring out.  Needless to say, it was stressful. 


When Ty first had the G-tube placed, we were told that if it ever came out we should deflate it and  put it right back in the hole so that it doesn't close.  Then to bring him in to have it replaced by a professional.  This was the first time (and hopefully the last time) it ever happened.  I grabbed some saline syringes right away and got to work with a new kit, but I just couldn't bring myself to keep pushing the new mickey into the hole in his gut once it became evident that I was hurting him.  I had visions that I was missing the hole in his stomach and we would be pushing chemo and other meds straight into his open abdomen.  Thank God for my beatiful neighbor Ginger who came here late on a Sunday night to help out instead of my novice attempt.  She has helped us access his medi-port before and she always has such a tender way with him.  He trusts her and remained very calm the entire time.  She is such a pro, and so caring.  She did such an amazing job, we didn't even have to go to the hospital.  This morning, while Ty was drinking milk, I attached a syringe and was able to see milk withdrawing from the new belly tube so I knew it was in the right place.  WHEW!   Another trip to the ER averted. 

The entire experience was more traumatic for us than for Ty.  He was more upset about going to bed than having to get his belly tube replaced.  That's why we call him SuperTy, right?? 

Hopefully tonight will have some sleep in the cards for me.  I am exhausted!

Thursday, July 19, 2012

Only one day left!

The 5K is on Saturday, and I am completely beside myself over how much money we raised in such a short amount of time.  Thank you, thank you, thank you.  When I set a goal of $10,000 I never imagined we would reach it, but I threw it out there because - why not aim big? 

Well, we are less than $450 away from achieving that goal!  I am utterly floored.  I understand that Lou and I do a lot of fundraising for the cause on different levels and times are tough for so many.  I just want to make it clear that we have zero expectations, and we are always overwhelmed by the kindness and generosity of others.  If you made a donation - thank you.  If you joined our team as a runner - wow - thank you.  And if you are unable to give, please know that you have already given so much just for keeping Ty in your thoughts and prayers and following him on this journey.  We are forever grateful to each and every one of you, for all that you do for us in so many ways.

How could this have happened to something so perfect?

Baby Ty on his first birthday
 

We'll never know.  But there is amazing research being done, and breakthroughs on the horizon that can help cure Ty and prevent this from happening to others. Thank you for helping us achieve that.  We believe in what they are doing at The Children's Brain Tumor Project (Weill Cornell), and we are thrilled that Ty will be an ambassador at this event.

To help us reach our goal for the upcoming 5K:
  • Visit http://www.braintumorevents.org/newyorkcity2012
  • On the upper left hand side, there is a red button that reads Donate to Participant. Click it.
  • Enter "Cindy Campbell" in the search fields (or any of our team members)
  • Click on name when it appears (I am listed under Pawling, NY)
  • When an individual's page comes up, you will see a button on the upper right hand side that reads "Give Now". Click it and follow the prompts from there
  • If you don't wish to donate online, there will be a link to print out a form as well.
Please share :)

Wednesday, July 18, 2012

Ty can play guitar

I hope you can view this video.  It probably won't work on a mobile device but I'll try to upload to you-tube and post on Ty's facebook, too.  He is so proud of his rock-and-roll discovery!  He can get those fingers to press down just enough for a funky jam :)


In addition to the guitar, Ty discovered that he can hold onto a balloon (the long kind that clowns use to make animals) and he lifts it up enough to pretend he is sword fighting.  He was working with his occupational therapist on this and he called me over to ask that I take a picture.  It was so cute, he never wants to take a picture!  It didn't come out great, but you get the idea.  He has one "sword" in each hand.  He told Lou that he wants to show him how he can "go cwazy."  He's such a funny kid.



Before signing off, I also want to add some photos of Gavin.  It's been a while.  Can you believe how big he is getting?  My crazy, handsome boy.



Tuesday, July 17, 2012

Watch out!

This kid is stealing hearts left and right.  Yours is next :)  Just look at Ty today.  AHHHH!!  I love him so much I want to eat him!  I know I'm his mom, but anyone would agree.  Right?  That smile makes my whole day happy. 



 
Ty is doing well.  He hates coming here every morning, but after his treatment he always looks so good.  We go home immediately for a day jam-packed with therapy, and he has a lot of energy which is wonderful.  I was afraid he would be tired after such a long morning every day, but it's the opposite.  If he isn't being entertained every minute, he yells at us from the couch, "I'm bored!"  It drives me crazy, but on the plus side... can you believe I can hear him from across the room?  He is getting so much stronger, and that includes his voice.  On occasion, I even catch him trying to sing again.  It's beautiful. 

Ty's physical therapists works on something new every day.  One day Ty had to work on shaking and nodding his head "yes" or "no" so communication can improve and he's getting there slowly.  Shaking his head "no" is happening faster than the nod because his head is too heavy/neck is too weak for the up and down.  FIGURES!  Haha.  Other days he is forced to sit more upright in a special support chair to improve his core body strength.  She works on his legs, where the greatest motion is seen in his inner thighs because he can bring his knees together slightly.  Before she started doing this with him, I had no idea the ability was even there.  Yesterday she taught him that he can hold onto some of his lighter toys if he "hugs" them to his chest.  All of this helps Ty to regain some confidence.  It is exciting to see.  Speech and occupational therapy is coming along great, as well.  He really loves them coming to the house and often says things like "I wonder what they gunna bwing to pway wif today!"

One of the most discouraging factors in this entire process has been getting Ty the appropriate equipment so he can continue recovery at home.  We have ordered all of these items through our insurance three months ago, and still they haven't come in.  Lou can't even get a call back, and we are told this is the norm.  For example - Ty sits on the couch propped up with pillows that we are constantly fluffing and adjusting to keep him comfortable.  He still hasn't received his wheelchair.  There is a device called a "stander" that is used to make sure his leg muscles remain activated to avoid atrophy.  Considering the fact that every one day spent immobilized in a bed can mean one week's worth of muscle depreciation, this is imperative and it is an immediate need for kids like Ty.  Three months wait time is simply too long, the atrophy started setting in before the device was even ordered.  Three months!  For an individual suffering a traumatic brain injury - the first three months of recovery are the most crucial.  By the time the equipment arrives, the individual's needs may have changed!  What a mess.  Thank God we already owned a bath chair and a few other items that we purchased with the money raised through Ty's fund to avoid this disgusting, inexcusable wait on some levels.  This is not just our experience.  This is what happens to everyone in similar situations and I am horrified by it.  Who knew?  These are children who need wheelchairs!  Toddlers who are in pain without the necessary equipment! I could go on and on. 

But, I digress.  We have had some fantastic thunderstorms over the past two or three days.  I love a good thunderstorm.  The mysterious crackling, the loud boom, the house shaking and the flashes of lightning.  How come something so loud and intrusive can be so calming?  I thoroughly enjoyed it. 
The heat, however, has been brutal.  I had to cancel my run this morning - boo hoo :) - and instead I picked up People magazine to read with my coffee!  A favorite pass time of mine that I used to enjoy every single Friday, but these days it's more like never.  

I just realized that I don't even enjoy it anymore because I can't read about stupid Kim Kardashian (or whomever) without becoming disgusted with some of the ridiculous quotes.  I was reading about Katie and Tom's divorce just now and thinking - "Really?  Am I supposed to be sad or surprised about how hard it might be to decide who gets the $30 million mansion?  They should sell that indulgent waste of space and donate the money to pediatric cancer research because it can happen to Suri.  Pediatric cancer isn't selective and it can't be prevented - even if you're a scientologist - but people like you can help change that!!!"  Ugh - I just turned the page and saw an article about Casey Anthony and now I have to just close this and throw it away.  Online shopping will be a much better escape for me.  This magazine is only making my head spin.  So much wrong on so many levels.  The gluttony and self indulgence makes me embarrassed to be human.

I digress even more!  Sorry!  A good gossip column is nothing to be embarrassed of.  I enjoy celebrity news myself and will step down from my soap box now.    I hope you all have a wonderful day.  Time to pick up Ty and drive home on this beautiful day. 

Friday, July 13, 2012

I hate running

Have I mentioned that?  Probably not, because I didn't realize just how much I hate running until I started doing it again.  Oh my God!  Every minute feels like ten.  I'm sucking wind the entire way and can't wait for it to be over.  When I signed up for the 5K and then another 10K in October (10K - YIKES!) I thought about how great it will feel to be working out again.  I haven't been going to the gym or running outside since Ty was diagnosed almost two years ago and I was really optimistic about this endeavor.  I went running in the heat today while Ty is in the oxygen chamber and I decided to just come clean about my feelings.  It's not fun for me.  I hate it :)

But, of course, I hate cancer more.  My baby boy suffers a bazillion times more than I do during my simple little jog in the park.  I am just being a whiny baby and I should be ashamed.  Poor Ty just wants to have fun and to feel better.  He doesn't want to do this anymore!  Look at this face.  Today he was so sad when we pulled into the parking lot for oxygen therapy.  He cried "how many more times we hab to do wocketship?"  We should be done in mid-August.  To a four year old, that's forever.  I just love this beautiful face.  He is a trooper. 

 

The 5K to support Ty's neurosurgery team at Weill Cornell is next weekend at Riverside Park.  I can't THANK YOU ENOUGH for all of the generous donations we received already.  Amazing.  I am pasting the information again below.  Please share with your friends if you have a chance.  Thanks again! 

To make a donation to our team:
  • Visit http://www.braintumorevents.org/newyorkcity2012
  • On the upper left hand side, there is a red button that reads Donate to Participant. Click it.
  • Enter "Cindy Campbell" in the search fields (or any of our team members, right now I'm the only one registered.
  • Click on my name when it appears (Pawling, NY)
  • When my page comes up, you will see a button on the upper right hand side that reads "Give Now". Click it and follow the prompts from there
  • If you don't wish to donate online, there will be a link to print out a form as well.



Wednesday, July 11, 2012

One year clear

One hundred more to go. 


Ty’s MRI was clean, stable, no evidence of disease.  It was perfect, beautiful and amazing.  It is proof that miracles happen.   I will always believe.  Wherever this life takes us, I find so much comfort knowing that God intervened for Ty and I have so much to be grateful for.  Keep it coming J

Last July, Ty finished his last radiation treatment in an attempt to suppress the weed that was spreading across his brain.  If you asked any one of the doctors involved in his care, or those who discussed his case in tumor board every week, not one would have guessed he would enjoy another year of life.  Let alone a year disease-free.  Today, I am conflicted only with the question of how we should celebrate.  I learned my lesson about shouting from the rooftops (harder than “the hard way”), so I think a quiet take-out dinner and a glass of wine instead of champagne – just to be on the safe side and keep those trolls away. 

I can’t believe he is one year in remission.  I wish I could say it was a blissful year, but there were so many treatment-related issues that I can’t look back fondly.  The brain bleed, the shunt, the lesion that left him paralyzed… what a year indeed.  On that same note, this year Ty went to pre-school, he vacationed in Mexico, he was walking with little support, he went trick or treating and he spent some time up on the “pirate ship” platform of his jungle gym outside.  I cherish those memories because I watched Ty defy all odds and reach milestones his doctor’s never would have imagined.  I look forward to watching similar triumphs in the months and years ahead of us. 

None of this would be true without all of your loving support.  Thank you all so much, for loving Ty.  For your thoughts, prayers and positivity. 

Tuesday, July 10, 2012

Max and Morris and a Bear

Goodbye Max and Morris.  Our first family fish is dead.  Belly up the morning before Ty's big MRI.  I tried.  I did.  I googled his worrisome behavior yesterday and concluded that he was simply bored and depressed.  I took the advice of other betta fish owners and put a mirror up for him to have a "friend".  I planned on buying a plant for his tank today. 

I find this a little amusing in my sick little head.  Of course he's dead.  Why wouldn't he be?  Any other family can keep a Betta fish alive for years but not us!  I hope you sense my sarcasm.  I am not upset over this finding in the least.  My son has cancer.  THAT is the only "big deal" that I'm faced with every day. 

In addition to the sacrificial loss of Max and Morris, our home was visited by a large bear two days ago.  The bear wandered into our neighborhood - of all neighborhoods - and he selected only the Campbell family garbage can - of all garbage cans - and he feasted on our leftover sausage and peppers and whatever else he could get his paws on.  Then he rested his big butt in my hostas, destroying a few of the plants, before running past Ty and Gavin's jungle gym into the woods behind my yard.  Unbelievable, right?  I am from Long Island.  The thought of getting a tick terrifies me (and I'm not joking).  Can you imagine how uneasy I feel about a bear running in my backyard?  Yeah.  I'm a little on edge over that, because that's where I need to be.  Did I mention Ty's bi-monthly MRI is tomorrow? 

Despite all of these little mishaps, I woke up feeling very alive and well.  Ty slept great.  He had a wonderful session with our at-home PT and it lifted my spirits yesterday.  He was sitting up in a new chair she brought over and he was working his legs for the first time in a very long time.  There was a lot of movement that I haven't seen in weeks.  Minimal, but it's there.  We can build on it and I'm excited for him.  Seeing that was just what I needed to turn myself around (and all of your thoughtful messages certainly helped me feel better, too - thank you). 

Here is my favorite picture from the past few days.  Lou took this during Ty's last day of therapy at Blythedale.  This kid is going to take a beautiful picture tomorrow.  It is going to be all clear.  Hope is ever present and always powerful.  Thank you all for continuing to think of us and to pray for Ty. 

Monday, July 9, 2012

I'll settle for the firefly


This sums up Ty lately.  He just hasn't been very happy and it's tearing Lou and I to pieces.  He is having head pain again, but Lou and I wonder if sometimes his crying is driven more by his overall sadness and less from actual pain.  It can be hard to differentiate his feelings because he's so young.  Then there are times where he cries and clearly says "I just sad!  I just sad!"  So young, yet sometimes so much older than a four year old should ever have to feel. 

We had a tough weekend because we were all so depressed.  Thank God for Saturday night.  Our wonderful neighbors had a huge party all day and into the night.  We tried to get Ty out of the house all afternoon to stop by the party, but he just refused.  He was sad and whiny leaving Lou and I on edge all day.  It's such a horrible feeling, to carry around that weight all day - dragging our feet, snapping easily, every whine from across the room sounds like nails on a chalkboard.  Then my in-laws came over, we put the boys to sleep, and we decided to go to the party just me and Lou.  Whew!  A night out, alone, surrounded by grown-ups, great food, drinks and poolside jell-o shots :)  It was fun.  We were able to relax for a couple of hours.  We smiled, laughed, we had a great time.  That night out will keep us going for a while now.  It gave us some much needed respite that we can hold onto for days. 

Yesterday our friends came over with their three girls.  Gavin was so excited to have friends over, he was really adorable.  They had a great time playing together.  Ty, on the other hand, wasn't as excited about sharing my time with them.  Especially not sharing me with the baby.  Their littlest girl is only four months old and holding her was like holding a little piece of heaven.  She was 100% edible.  I want more babies of my own so badly, but yesterday just reinforced why that isn't in the cards for us.  Ty needs more attention than an infant.  He can't feed himself, he can't go to the bathroom, he can't roll over in bed or hold his head/body up to sit.  We're tending to him constantly and it wouldn't be fair to introduce more "need" right  now. 

Maybe you will relate to this, maybe you won't; but when Ty was born I used to have terrible thoughts about something bad happening to him.  If I was holding him near our glass coffee table, I imagined dropping him into the glass (we replaced the table with an ottoman).  If he was sleeping, I imagined he wasn't breathing.  If I was taking him for a walk, I would play out the scene of what I would do if a rabid dog ran up to the stroller out of the bushes.  Is that crazy?  I grew out of it over time.  I finally learned to let go of his hand and he climbed up the slide.  I let him run <eek!> on the boardwalk, even though I was wincing internally at the thought of him tripping.  Today, I live with even greater worries.  Today, I worry every single time I approach his sleeping body that maybe he is dead.  Lou and I talked about this, and he has the same sick thoughts all the time.  This morning we talked about how defeated we feel lately.  We can't bear to see Ty so sad and so disabled.  We feel like we are giving up, and we don't want to!  Ever!  After a few difficult days we both just want to sit back and scream at the sky, "bring it on... however this story is going to end... happy or sad... please just bring it... because we can't stand living in limbo anymore."

Which brings me to the firefly.  Last night, while Lou was in bed with Ty, I heard Ty scream out three of four times while I was cleaning up and doing the dishes downstairs.  I dropped a glass, abandoned the rest of the dishes, stepped outside into my backyard and broke down.  I cried to the sky.  I searched the stars hoping to see one streak across the sky - something to reinvigorate my hope.  I was praying for Ty's healing... begging... like always.  I calmed down after a few minutes because I eventually become content knowing this is out of my hands, but I lingered on the patio for a while before going in to bed.  Instead of a shooting star, a firefly soared across, way up high in the sky.  It was pretty.  I felt better.  I'll settle for the firefly for now.  One foot in front of the other. Tomorrow is a new day.

MRI Wednesday.  The next few days will be riddled with anxiety.  As you can already tell.  Thank you for your love and support. 

Friday, July 6, 2012

Yay for Friday

Last year at this time, I was commuting into the city every morning for Ty’s second course of radiation therapy.  I experience déjà vu sometimes during my early morning drive to oxygen therapy because it reminds me of those trips, and I am surprised to admit that I am actually fond of the memories.  Although this routine is getting old and tired, it’s not all terrible.  These mornings with Ty are also very special.  We have some adorable conversations during our car ride and when he’s sleepy in the car I enjoy the alone time to get lost in my thoughts.   During his radiation treatment we used to pick up my coffee on the way in, and stop at a toy store or some place fun on the way home.  Today Lou is with us and we will be taking Ty to the mall for a treat after he finishes his therapy.  He doesn’t know yet – he will be very excited.

Today is Ty’s last day at Blythedale.  He received a very special package filled with “Ty” beanie babies the other day and he is going to share them with his classmates before saying goodbye.  He asked me three times this morning if I remembered to bring them.  I love that he is excited to give them out.  I love that he is thoughtful, generous and caring like that.  We will be sure to take some pictures and post them soon. 

Despite my confession that there are parts of this routine that I truly enjoy, I am also thrilled that the weekend is here.  And so is Ty.  The holiday in the middle of the week made this such a nice, easy week! 

My conversation with Ty when he woke up this morning:
“Mama?  I want morning snuggles.”
“Me too.”  <snuggles>
“What day is it?”
“What day do you think it is?”
“Umm.  I dunno?  TGIF?”
“TGIF, Yes.  What day is it then?  Starts with an ‘F’.   F-f-f-f??”
“Fwyyy day!!!”
Next week will be stressful, so Lou and I hope to enjoy the weekend as much as possible.  I hope the rain stays away so we can have some fun outside.  Ty’s bi-monthly MRI is scheduled for Wednesday.  He will also be getting his Avastin infusion and he will be seeing the MSKCC dentist to address his post-treatment tooth decay.  We are very nervous about that.  Have a great weekend.  XOXO.   

Thursday, July 5, 2012

all good things to report

The boys were so good yesterday.  They sported their red, white and blue and even allowed us to go to a pool party that was being hosted by some wonderful neighbors in our development.  It was 90+ degrees outside so we couldn't stay too long, but Ty was such a good sport.  Even when his cheeks were cherry red and his face dripping with sweat, he smiled at our jokes. 

Last night our neighbors had a tremendous fireworks display in their yard (which is essentially a large open area).  It was the same show we took Ty and Gavin to last year.  This year Ty was too tired to go and he complained that the fireworks would be "too wowd (loud)" so Lou stayed home with Ty and I headed over there with Gavin.  It was totally awesome.  Gavin loved it and he kept clapping "more fireworks" after every one.  Thank you, John and Ginger, for this vision of Gavin that I will cherish forever.  I'm so glad he still got to enjoy himself in the pool this afternoon, and that he got to see the fireworks.  Sometimes Gavin gets gypped out of a lot of normal kid stuff and it makes me happy to see him enjoying himself like that.

This morning we returned to oxygen therapy.  Ty had a wonderful night's sleep (not even a whimper) and he woke up so happy.  During the hour-long commute, we played "I spy" and Ty was being so funny.  He just cracks himself up. 

Me:  I spy with my little eye, something yellow.  They were growing in the ground on the side of the road.  They're really pretty, they have petals, and I wish I could pick some and put them in a vase at home.
Ty:  Ummmm.  The sun!
Me:  Ty, no, you're not even paying attention.
Ty:  Ummmmm.  A stweet sign?
Me:  No...(I repeat my entire clue).  These come in all different colors.  Not just yellow.  They can be pink, purple, red, white...
Ty:  I know!  CANDY!  <insert absolute hysterical laughter here>
Me:  What!!  Candy?  Nooo.  C'mon, you know the answer.
Ty:  I know!  BALLOONS!  <insert more hysterics>

And so on....  He's such a clown.  This is how Ty remains the happy little boy that he is.  He laughs at his own silly jokes.  He teases everyone.  He keeps on keeping on despite all the sadness that has been forced on him.  He's amazing.  That's why we call him SuperTy :)

Today will be our second to last day at Blythedale.  Next week his at-home therapy begins.  His speech therapist and feeding therapist at Blythedale are both out for the rest of the week, so we already said our goodbyes.  Today we will just stop in for PT and OT, then we can cut out of there nice and early.  I can't wait, I already feel so FREE :)  I usually don't pull into the driveway at home until 4 or 5PM, but today I may be home as early as noon!  I will have the whole day ahead of me to enjoy Ty and Gavin.  This is such a treat, I hope Ty feels well. 

As most of you noticed, I've been feeling blue lately.  Our rigorous schedule was taking a toll on me, and Ty's situation simply gets depressing sometimes.  He has been off his daily chemo for two weeks since the last surgery, and we were supposed to start it up again on Tuesday.  I stalled until Wednesday.  Then, yesterday, Lou and I were like, "well, it's the holiday, let's give him off today, too."  This morning he woke up so wonderful.  He was lifting his hands beautifully and trying to reach across to hit Daddy.  "See, this is why I hate to put him back on the chemo.  He feels so much better and looks so much stronger without it."  His appetite has been decent, too. 

I hesitated this morning.  I held the syringe filled with his chemo and I struggled with the decision.  Should I just go ahead and give it to him?  Is this really even doing anything?  Sometimes I worry that we are just filling him up with poison when the bottom line is... if this evil cancer is planning on coming back - this isn't going to stop it.  But then, what if it did come back on a day that I decided to skip a dose.  The guilt!  The what-if!  What if there is one measly cancer cell floating around in that head of his and this little syringe will catch it before it spreads.  I hate having this in my hands.  For now, we will continue the course.  But, the decision to hold treatment is always one that Lou and I struggle with.  Some day we will have to stop, wait and see because he can't be on this treatment forever.  It will stunt his growth.  It's already ruined his teeth.  He doesn't eat well on treatment and the chemo itself can cause different cancer.  Not.  Fun.  That's why new treatment options on the horizon are our greatest hope.  I am going to repost the details for the 5K at the end of this post.  So many of you have made such generous donations, and I am SO EXCITED to see a bunch of you there, running alongside me.  Thank you for joining the team!

  
Here is the information on how to join Team SuperTy as a runner:
  • Visit http://www.braintumorevents.org/newyorkcity2012
  • On the upper left hand side, there is a gray button that reads Register Here. Click it.
  • Scroll down on the waiver and hit "I agree"
  • On the next page, select "Join a team" then select "SuperTy". Hit "Continue"
  • Fill out the form and create an account with a unique username and password
  • Complete payment for the $25 registration fee (and any kick-off donation you want to make) by including a credit card and submitting for payment
  • You are all set! Now you can edit your page, add photos or videos and start an email campaign to solicit donations. It is all pretty easy to navigate.

If you can't attend the event but still wish to make a donation to our team:
  • Visit http://www.braintumorevents.org/newyorkcity2012
  • On the upper left hand side, there is a red button that reads Donate to Participant. Click it.
  • Enter "Cindy Campbell" in the search fields (or any of our team members, right now I'm the only one registered.
  • Click on my name when it appears (Pawling, NY)
  • When my page comes up, you will see a button on the upper right hand side that reads "Give Now". Click it and follow the prompts from there
  • If you don't wish to donate online, there will be a link to print out a form as well.

Monday, July 2, 2012

Sick and tired of suffering

I will never know what changes from one day to the next.  All I know is I go to bed with a smile on my face after a good day with Ty.  Every single time, I think to myself, "Today was such a great day.  Every day should be like this for Ty.  I hope this is the first day of his continuous improvement.  Maybe every day will get better and better from this day forward."  Then I wake up to screams and agony in the middle of the night, or in the morning, and my head spins because I don't know why.  Why one day he eats like a champ and the next day has less than 1/4 cup of juice all day.  Why one day he doesn't wince in pain at all, and the next day requires morphine just to get him comfortable.  The good days and bad days just blend together now, and it's become part of our everyday life.  We never know what kind of day it's gonna be.

We are sick and tired of it.  Lou and I are getting more and more upset during the bad days because we just can't watch Ty suffer through these headaches anymore.  This started two years ago.  Ty has been in suffering for TWO YEARS!  We are helpless when he is in pain and it makes us crazy.  We spend so much time talking about why.  About what we want for Ty.  About what  physical limitations we are willing to accept for Ty as long as he is happy, versus what our greatest fears are.  In the end we both agree that as long as Ty is happy, as long as he still smiles and there is an end to his pain sometime in the future, then who cares what it is doing to us now.  Everything will be okay if Ty is okay. 

I was so deflated this morning because I was sad for Ty, and then I saw this picture from over the weekend and it turned my whole mood around.  What am I going to do with these two goofballs?  I couldn't be luckier.  I couldn't be more in love.  I have to thank Ty's beautiful speech therapist at Blythedale for the laugh this morning - she gave him these glasses in a gift.  We will be switchng hs therapies to at-home services by the end of the week and she will be missed.  It is a welcome transition because our schedule won't be so incredibly brutal, but we will miss all of Ty's therapists and teachers at Blythedale. 


Fingers crossed for a good day today.  Thanks to all of you that have joined Ty's team in the upcoming 5K, and for all of the generous donations.  I will continue to post that information every few days and appreciate everything you're doing for Ty and kids like him.