Showing posts from September, 2011

As Ty likes to say, "I getting stawnga and stawnga"

Ty kicked off today with a rigorous session with his physical therapist.  What an amazing thing it is to watch him toss a ball into a bin, or scoot across the floor on his butt, racing Gavin.  He is a force to be reckoned with, but you all know that.  Throughout the entire month of February and March, Ty could only move one arm and he couldn't move his legs at all - not even wiggle his toes.  In April, he began to lift his strong arm to his mouth to eat, wiggle his toes, and try to support his weak arm with his strong arm.  That is how limited he was.  I don't think many people realize just how bad he was just months ago.  In fact, he only started supporting his head in July (being able to pull away from my shoulder), and he has only been able to sit independently in a shopping cart (i.e. at the supermarket) since August.  All of our previous trips to the supermarket involved me carrying him or I would place a blanket in the cart to help support him as I held the trunk of his

Blissful days, sleepless nights

I am still so restless at night.  These days, however, I am happy to say that it isn't Ty who is keeping me up all night.  Just the buzzing in my head.  I am going to keep this post very short, because I have a new plan of attack tonight that involves chamomile tea and a mindless novel (no more late night cancer research!!!).  WE HAD A GREAT DAY!  Ty had his second day of preschool, and I can honestly say that he had fun!  He was engaged the entire time, he only whined to me once or twice about going home, and being around the other children inspired him to be more physically active (i.e., he wanted to practice walking down the hall with his backpack on like the others, and he wanted to try the slide on the playground afterward).  The kids made apple muffins in school today, and Ty brought his home for Gavin.  He also ate a handful of goldfish at snacktime, just like his new friends!  This is incredible because Ty hasn't put a single goldfish in his mouth in months.  I was so

Turning the corner

Today we started Ty's new metronomic chemotherapy regimen.  Some of the medication stays the same, and we are rotating in some new medication as well.  We have a daily schedule - printed with check boxes on an excel chart - for up to six months.  His next MRI is scheduled for November 8th.  I can't even explain to you how much it scares me to have a plan in place because as you all know, every time we had any sort of schedule or protocol it has blown up in our face. Regardless, I am excited and hopeful that we have turned a corner.  That this time, Ty will not face any setbacks.  That he is getting better with every day and that's never gonna stop :). Ty will continue to get Avastin at the hospital via IV every two weeks.  That drug is intended to prevent any new, abnormal vascular growth which feeds the growth of new tumor.  Biggest side effect concern with this medication is bleeding (due to the decreased vascular growth/recovery).  Today he started taking small doses

Highs and Lows

Since the beginning, this journey has certainly been one of triumphant highs and devastating lows.  Over the weekend, our highs and lows weren't as dramatic as in the past, but still it feels like I'm getting hit with a brick every time something scary catches me by surprise in the middle of a perfectly good day.  This past weekend was predominantly filled with moments of joy and laughter, and I plan on focusing on all of the highs for the majority of this post. But, I would be lying if I didn't share some moments of panic with you all as well.  You are with me every step of the way, so I've always felt it is important to share the good with the bad :)  Let's get the lows out of the way first.  The first of which pertains to Gavin, not Ty.  He has not been sleeping well for the first time in his life (he doesn't have allergies, no new teeth coming in... can't figure it out).  I have had to rock him in his rocking chair several times throughout the past f

Preschool Take Two

Ty did so well this morning!  He cried and said that he didn't want to go to school, but I reminded him that we were going to make a gingerbread house afterward and then he practically jumped off the couch, breakfast in hand (a banana) and he was ready to go!  My mom recently helped me clean out my pantry, and we came across a gingerbread house kit from last Christmas.  Gross, I know, but I knew Ty wouldn't be interested in eating any of it; it would just be fun for him and Gavin to put together and decorate.  He has been watching a ton of Max and Ruby lately, the "Very Bunny Christmas" DVD in particular, so I knew he would be so excited about building a gingerbread house with gummy worms just like Max does.  He was talking about it all morning.  Gavin and Ty worked together and it is a true work of art ;) I didn't get a picture of them with the house, but here is the finished product.  Although Ty didn't last the entire time in the classroom, he did sti

Preschool Shenanigans

Preschool was a complete bust this morning.  Ty was so stubborn!!  Which, is fine, really, we will try again on Thursday.  In fact, when I gave up and got him back in the car (the only time he calmed down in over an hour prior) we talked about coming back in a couple of days and we made a deal that he wouldn't give me such a hard time next time.  We even shook hands on it, so let's see how true to his word this guy is gonna be.  Knowing Ty, something tells me he will stick to his word.  He's just special like that.    Here he is all dressed and ready to go.  You can tell he's not happy with me.  But he did look very handsome.  I was disappointed because I was looking forward to it.  I just know once he gets into that classroom he will be so happy to play with other children his age.  School starts at 9AM but Ty didn't wake up until 8.  I think that was part of the problem.  I rushed him to get dressed when he didn't want to.  He fought me tooth and nail ove

Quick catch up

Lou and I had such a nice weekend in Providence, I still feel a little guilty - even after spending all day with Ty and Gavin today.  I know I shouldn't, especially because Ty was feeling good the entire time we were gone and he barely even put up a fuss.  Aunt Debi was watching both Ty and Gavin and she said they were absolute angels.  I was so anxious to get home all morning on Sunday, and when I walked in the door I was just flooded with happiness as soon as I heard the shrieks coming from the other room as we walked in.  There is nothing sweeter than that sound, I swear.  Ty was sitting at the kitchen table like such a big boy and he was drawing me a picture for my big homecoming (I was gone for exactly 26 hours). The wedding was so incredibly beautiful.  I had a wonderful time and I was able to relax completely once I was surrounded by my closest friends with a text message in my pocket that read Ty was sleeping soundly.  For those of you who are curious - althought I did ge

Wedding weekend

I won't be able to post for a couple of days because Lou and I will be attending a wedding in Providence tonight.  Given the situation with Ty, I always wondered if I would be able to attend - and I am so thrilled to actually be going!  I can't wait to see my friend, Linda, in her wedding dress, and to party with some of my best friends who I don't get to see nearly enough these days. The last time I saw Linda I told her that it's been so long since I've let loose, that I'm afraid I might embarrass her if I drink too much at her wedding!  She recently sent me a note that stated: "I am so very much looking forward to seeing you on the Big Day and I wouldn't mind one bit if you got drunk off your keester and fell on the dance floor.  In fact, I would be honored." While I certainly hope that doesn't happen, I just wanted to document the permission I received from the bride so when she looks back on her wedding video in horror she will know t

Oh, beautiful rainbow! Oh, magnificent moon!

Tonight was filled with signs of hope.  Never before have I been given such signs.  I can't wait to tell you all about it.  I feel so at peace tonight. It was an ordinary day.  I went for a walk with a friend in the late morning and set out to pick up around the house after Ty's therapy this afternoon.  While I was in my bedroom I stopped to press my finger against a necklace with a medallion of Saint Peregrine (patron saint of cancer).  It was hanging over a framed photo of Ty.  When I did that, I was reminded of an older man that came out to meet Ty at the Iron Riders event back in July. What was it that he gave me?  I had to find it, so I set out searching through my things and quickly came across a handwritten note from this gentleman.  A sweet man who survived cancer by a "miracle of God," he told me.  His note was brief, and it mentioned a special cancer healing mass in honor of Saint Peregrine that would be held at a nearby church that I had never heard of

A Poem for Pediatric Cancer Awareness - Thank you, Laura!

I continue to torture myself tonight.  Ty was exhausted from his medication by the end of the day.  He fell asleep early which allowed Lou and I to do research on the computer together (mostly trying to plan for our November vacation).  Anyway, after Lou went up to bed I was closing out of the screen and I must have accidently launched something from my desktop because a video of baby Ty began to play.  He was 14 months old and laughing an infectious laugh.  That was where everything went downhill for me.  I started watching video after video after video.  God, to see the "before cancer" versus "after cancer" videos is just devastating.  Ty was able to speak more clearly at 2 years old than he is today.  He was the picture of perfect health! Then there are painful videos from the hospital where he barely looks like himself.  I didn't want to be sad in the midst of such happy times, so I wasn't planning on posting anything tonight.  But then I received the sw

A nice, quiet day for the Campbell's

Ty's 21-day treatment on oral Temodar is coming to an end.  There is enough chemo in the bottle for just two doses tomorrow and one more on Thursday morning.  It was taking a toll on Ty today, but his doctor said that it is to be expected.  That the treatment tends to build up and get worse as more time goes on.  Luckily, the worst of it just makes Ty extra sleepy and he had indigestion for a few days so he hasn't been eating.  I mean, no food at all other than apple juice and a blue push-pop in two whole days.  Finally, tonight he started eating again around 9PM.  He ate four pieces of bacon and he told me, "I wub that bacon, Mommy."  Anything to get some calories in there.  Oh how I wub that little man. Since he has been so sleepy, I actually got a chance to clean house and get organized a bit today!  It was kinda nice.  Once the doctor reassured me that sleeping until 10AM and napping for two-three hours is perfectly fine given the medication he is on, I stop


Why do I do this to myself?  The house was quiet. Ty and Gavin went to sleep nice and early, so I tried to go through my paperwork.  I came across a number of printouts on various clinical trials and the late night googling began.  After reading three recent journal articles on AT/RTs (a tumor most similar to what Ty has), I am utterly depressed.  The prognosis is just so poor.  The mean overall survival rate for kids with Ty's cancer is 15 months.  Ty isn't even there yet!  I am so mad at myself for doing this.  It simply isn't healthy for my body, mind or soul.   This is what I need to keep focusing on.  This face.  This amazing little boy who will beat the odds, and who looks better than ever.  Anything is possible.    There is nothing average about Ty, and he will not be meeting the average expectations when it comes to his prognosis. Right now he shows no signs of even having cancer and maybe that's because he doesn't?!?! The radiation worked wonders on

Remembering 9/11

The boys are both doing well.  This morning I left them with Lou so I could spend the day at the firehouse with my great friend Christina and her family.  Her brother, Andrew, was a firefighter for Ladder 5 and one of the first to respond to the attack on the World Trade Center.  In 2001 I lived in downtown Manhattan and on that day Christina and I walked the streets in search of any news on her brother and his fellow firefighters.  We ultimately found ourselves waiting for hours on end at his firehouse and the surrounding area.  Today we spent time talking about that day and remembering Andrew.  I truly believe he is watching out for Ty and so many others from up above.  God bless all of those precious lives that were stolen from this earth on that horrific day.  Never forget.  The attacks of September 11th were intended to break our spirit. Instead we have emerged stronger and more unified... We are more determined than ever to live our lives in freedom. -- Rudolph W. Giulian

Can you believe Gavin is sick?

When Ty was diagnosed, Gavin was 21 months old.  Since then I have had to keep him away from other children, literally.  Daycare, playdates, preschool, even the playground, to avoid the spread of any germs.  To my utter amazement, I can proudly report that Gavin was not sick once!  Until now, of course, because that's just the way it goes, right? Ty gets a clean scan two days ago, and Gavin comes down with something just two days later.  We both have allergies and mine have been hitting me pretty hard lately so I didn't think anything of it when Gavin was sneezing, but he just woke up in the middle of the night feeling a little stuffy and uncomfortable.  I gave him some Benadryl and rocked him back to sleep just a little while ago.   Maybe it's just his allergies acting up, too.  I hope so.  I have to admit, though, that I enjoyed it being Gavin for a change.  That I was able to give him 100% when he was feeling a little under the weather.  I feel like I can be his dedica