Showing posts from July, 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! 

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 s

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
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

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 e

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 s

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.

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

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.  Toda

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 on

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 leftove

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-law

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

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

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 suf