Wednesday, September 28, 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 body straight and pushed the cart with my elbows.  I will never forget the first time I stepped away from the cart to grab strawberries.  It was just in late July and I was so nervous about leaving him to support himself, but he did fine!  It was so refreshing; like we found a whole new sense of freedom for us both.

His physical therapist is amazing.  He is only on his third week of treatment and he gets so excited to show off whenever she arrives.  She has two boys of her own, and I just know she must be a great mom because she so "gets" Ty and Gavin.  She says Ty has an advantage because he is relearning what he already knows.  In most of her cases, the children with special needs have to learn a new way of doing things that they otherwise are unable to do... so they are more or less starting from scratch.  For Ty, the ability is there, he just needs to build strength and coordination.  He is getting there.  It is taking a bit longer than I hoped, but I have no problem being patient with this.  As he continues to improve, so does the quality of life for all of us. 

Just last night I was lying in bed thinking about how much better he is sleeping now that he can roll over from side to side.  For months on end, he used to have to wake up Lou and I in order to turn over or reposition himself so he could be more comfortable.  Now he rolls over, scoots close and wraps his arms around me at any given moment throughout the night and it is the best feeling in the world. 

Christina, your comment about Lea wishing at the well for Ty to feel better and for his legs to get stronger made me cry a river - in a good way.  It was beautiful.  So sweet that a child his age would look at him with such love and care enough to spend her wish on his continued strength.  That she noticed his weak legs without being told just melts my heart.  I hope all of his new classmates at preschool - and first grade, second grade, third grade... are as compassionate and understanding should he have additional delays.  I think most of them will be.  There is always so much sweetness all around us.  I adore being able to stay in his classroom because I just want to devour all of those three-year olds.  They are so cute and just so funny!

When Ty was a baby, I couldn't wait for him to roll over, to sit up, to crawl, to stand, to walk.  I just need to remember how long it took for all of those milestones to be met, yet how quickly that time went by in hindsight and how much I miss those days.  Days like this one.  Ahhh, my baby!  I just love those baby days.  Now my boys are getting so big!  Thank you God. 


Shana Tova to all of our Jewish friends :)  Wishing you all of God's blessings in the new year!  Goodnight everyone.  Love you all so much. 

P.S.  In case anyone is wondering if the chamomile and mindless novel worked, I fell asleep around 2AM last night and slept solid until Gavin woke up at 7.  Not bad!!  Hopefully tonight will be even better. 

Tuesday, September 27, 2011

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 excited. 

Ty's appetite has been pretty good considering the new meds he is on, and that is a huge relief.  So far, so good.  He hasn't complained.  Let's see how his bloodwork comes back at the end of the week.  I think it will be a strong count. 

XOXO.  Goodnight... sleep tight...

"The bravest sight in all the world is someone fighting against the odds." - Franklin Lane

Monday, September 26, 2011

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 of Celebrex and Etoposide.  Yes, Celebrex, better known for treating arthritis, in combination with other chemotherapies, has been proven to trigger some sort of "self-destruct" activity in cancer cells.  The Etoposide is the daily chemotherapy/systemic toxin, that is part of this regimen and it has proven to work well with Celebrex in destroying existing microscopic disease.  In fact, Ty's doctor has one patient on the same regimen who had amazing results fighting an existing brain tumor.  He or she was too weak for traditional chemo and radiation wasn't an option.  The tumor has shrunk significantly in that child, and that is very promising for Ty considering we are only dealing with microscopic disease at this point (or maybe no disease at all! it's impossible to know, but that's what I like to think to keep positive).  The worst side effect on the high doses of Celebrex is constipation, drowsiness and loss of appetite.  The Etoposide may be harder on him with the side effects being nausea/vomiting, diarreah and possible hair loss. 

After 21 days of Celebrex, Etoposide and Avastin, Ty will take one week off and then start up another 21 days on the Temodar and Avastin routine that we just completed last week.  As we've seen, the Temodar only gives Ty occasional nausea, drowsiness and loss of appetite - but his counts remain very strong throughout treatment.  We will go back and forth on the two regimens over the next few months and I hopefully Ty will do well.   Hope he doesn't lose his hair!  Because he is looking so cute with it all grown in on top :)


So, that's where we are at on Ty's treatment.  Day one went off without a hitch.  In fact, it was an amazing day.  Ty ate a total of five chicken nuggets today, three yogurt smoothies, one-half turkey roll up and a couple of lollipops.  This is about ten times more than he has eaten in days.  He was happy all day, and we had loads of fun.  We went to the park today and brought his kites, airplanes, bubbles and snacks/sandwiches for a picnic.  Ty watched Gavin running all around on the playground, which worried me a little, but instead of looking sad or envious because he wanted to do the same... he was excited and asked me to help him climb and swing and slide.  It was awesome.  He had physical therapy at home later today, and he was fully engaged the entire time.  I built a racetrack for his Hot Wheels this morning and the PT thought it would be a good idea to let him play with it and chase the cars around the house, practicing his walking and bending down to pick up the cars.  He did great!  He was so pooped, he needed a nap. 

Gavin did, too.



Now please excuse me while I curl up next to him to do the same thing.  I can't wait to get some sleep tonight.  I hope I can fight the insomnia without jumping at Ty's slightest movements throughout the night in fear that he is getting sick.  I think it's going to take a few days before I know what to expect, and until then I am going to have a hard time sleeping when I am so unsure of how these new meds are making him feel.  Fingers crossed for at least a few hours of rest and relaxation.  And, for Gavin to sleep through the night.  Boy did he fight us going to bed tonight, but so far so good.  All is quiet and peaceful at the Campbell's :)  Goodnight and thank you so much for your love and support.  

Sunday, September 25, 2011

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 few nights, and he's waking up about two hours earlier than usual.  I know this happens, kids go through this, but I just can't help but think that if this keeps up I'm going to get him an MRI.  Gavin is the same age as Ty was when his sleeping began to get worse and I can't stop my mind from imagining the worst.  Instead, I am thinking of any possible environmental cause that may have harmed both of them and it's simply unhealthy (like, "I should have bought more organic produce!!").    P.S. I know this is totally irrational.

As for Ty, I am happy to report that the lows have been minimal for quite some time now, but when anything happens that seems even remotely similar to previous symptoms indicating tumor burden, Lou and I can't help but get sick with worry.  Lately Ty has been throwing up more frequently, his speech isn't improving and he has absolutely no appetite.  For example, yesterday he ate nothing but two chicken nuggets, all of which he threw up just minutes later, rice puffs (which have almost no caloric value) and some Pediasure supplements that I pushed through his G-tube but that also made him vomit afterward.  So. today we didn't push him to eat anything other than apple juice and yogurt smoothies and he didn't end up getting sick at all (phew!)

The nausea was very unexpected because this was Ty's "week off" of chemo (he starts his new regimen tomorrow morning).  He hasn't been sensitive like this since his last successful tumor resection, so of course it worries us.  However, Ty's nausea has not been associated with any headaches, and that is a TREMENDOUS relief.  So, we are keeping track and trying not to get too wrapped up in it.  His doctor believes it can still be a side effect from all the Temodar we pumped him with over the past four weeks.  Even though he is getting small daily doses, it is a strong, toxic medication so the side effects can build up over time.  Besides, it clearly bothers us more than it does him.  Here's Ty clowning around in my sunglasses right after getting sick earlier this week :)

 
Speaking of Ty's doctor, let's move on to the happier events over the course of the weekend.  Friday is always our weekly travel day where we make our way into the city for a visit to the clinic.  Our neuro-oncologist has hundreds of patients with devastating diagnoses, but we always feel like he gives Ty 100%.  In fact, when I walked into the exam room I was confused because I saw the back of a bald man's head and it isn't like him to miss our appointment.  Imagine my surprise when he turned around and it was Ty's doctor (a younger man who previously had a full head of hair).  I was so impressed when he took out his camera to show me pictures of two young MSKCC patients that he allowed to shave his head for a St. Baldrick's event earlier that day.  If you aren't familiar with the organization, please check out their website.  They do amazing things.  Anyway, it was so nice to see him as an ordinary person doing something extraordinary in honor of all the amazing kids who are fighting for their lives.  Obviously something that is near and dear to us both. 

We discussed Ty's next round of chemo in detail, and we went over his bloodwork (which was perfect!).  Ty didn't gain any weight, but he didn't lose any either!  He is holding strong at 25 pounds (when this all began he was 27 pounds but he was also several inches shorter).  The most important part of our discussion, however, was when he shared a very personal and non-medical opinion with me.  He said he watched Ty's "year in review" video on YouTube - which alone is so touching knowing that he treats so many kids just like Ty, all of whom have websites, blogs, videos, bracelets, etc. - where does he find time?  Anyway, he looked me in the eye and he said that as he reflected on all Ty has been through over the year, and all of the devastating setbacks, that he believes Ty really is a miracle.  Those words coming out of his mouth and the vision of his wide smile and reassuring nod is something I have been replaying over and over in my mind all weekend long.  It makes me feel amazing.  I think so, too.  I believe in his miracle.  Please may his cancer never, ever, ever, ever, ever come back.  Our next MRI is November 8 and it can't come soon enough. 

We had a wonderful visit from our Long Beach friends this weekend, too!  Ty's best buddies Eva and Theo came to visit on Saturday, and they even brought a bunch of pre-birthday gifts for Ty (he will be four on October 4th) including a new play kitchen!  It is the same one that he and Gavin monopolize whenever we are at their house.  They both LOVE it more than you can imagine.  Their parents (our great, great friends) were simply amazed at how far Ty has come in just the few weeks since they have seen him last, which is always reassuring for Lou and I.  The best part of the visit was watching them all play together like regular kids!!  Whenever Gavin, Theo and Eva were running around the house chasing each other, Ty insisted on getting off the couch and participating.  I would hold him under his shoulders and he would run with all of his might.  I was totally exhausted supporting him, but he wouldn't let me stop.  I swear he didn't even notice that he could never actually catch Eva or Gavin, and I don't think they noticed either.  All I heard were shrieks of laughter - the most beautiful sound in the world.  Eva also sat with Ty and played game after game with him.  Ty was thrilled to report that he no longer needs my help pushing the dice "bubble" on one of his games because he's getting so strong.  Another small triumph for our little fighter.  I'm so happy he had so much fun.  BTW, Gavin is not choking or hyperventilating in this short video.  He is just being his usual goofball self.  I never know what is going through that little mind of his. 

video

After such an exciting day yesterday, we didn't know what to do with Ty and Gavin today.  We encouraged Ty to play outside - which is something he simply does not like to do because he is so limited.  To our surprise, it didn't take much to convince him.  Lou told Ty that he thinks he is ready to try riding his battery-operated car in the driveway and Ty seemed excited.  He did so great in that car, too!  It was a gift for his third birthday that he rarely got to use, and soon enough he will be too big for it!  He has grown so much (and in so many ways). Today's driveway fun lasted about 30 minutes before the boys got out of control, but it was a wonderful half-hour for all of us.

   
We decided to take a drive out to Aunt Debi's house to see the family (Nana and Papa were also visiting).  Ty and Gavin were just so excited because we told them it would be a surprise.  They got such a kick out of walking through that door unexpected. Ty yelled "surprise!!!" and Gavin just yelled, but regardless it was very cute.  We headed home for the football game, ate a very fattening dinner and now we are off to bed.  A nice end to a nice weekend.

Goodnight all.  Thank you for your continued love and support. 

 
  "If children have the ability to ignore all odds and percentages, maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell." - Lance Armstrong

Thursday, September 22, 2011

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 stick it out for over an hour and he didn't complain much at all.  Not too shabby for his first day.  I was with him because of his physical disabilities, but within the first five minutes in that room I knew that I would be more than comfortable leaving him in the hands of the most amazing women at Christ Church Nursery School.  That place is filled with such a great understanding of children and it is such a warm, loving environment.  I look forward to the day Ty turns around to wave "bye-bye" as he walks into his classroom all by himself. 

We drew pictures of ourselves, we built a castle out of magnetic blocks, we raced cars, we sat still for a book during story time and we heard one sing-a-long song, but that was around the time Ty started whining to go home so we ducked out early in order to make sure he remembers it as a fun place that he wants to go back to next week.  All in all, I am so proud.   I complained to my sister about wishing Ty was on his feet again by now, and she reminded me of what's most important...

"A year ago, did you ever think you would be bringing Ty back to preschool?"  No, I didn't.  I feared I would never see this day again.  I am so blessed and lucky. 

Tuesday, September 20, 2011

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 over brushing his teeth and going to the bathroom.  He just wanted to ease into a nice, quiet day at home.  He told me over and over and over again that he didn't want to go to school or anywhere for that matter.  When I tried to strap him into the car, he displayed more physical strength than I have seen in ages.  I couldn't strap him into his carseat at first!  The next thing I did wrong was try to wait it out.  I called the school and told them I was going to give him more time.  I also tried to calm him down in the parking lot once we finally arrived to no avail.  By the time I actually walked my screaming child into the school, the others had already been settled down for almost an hour so the last thing I wanted to do was undo everything the teachers had done to make the other children comfortable.  It was obvious Ty wasn't going to calm down, so I decided to go home and try again on Thursday.  Ty was pleased with this decision.



Even during his darkest moments, his fighting spirit always flickered inside of him.  Although it is hard to be patient with such a stubborn boy during every day life (yay!! everyday life how I love thee!!), I am grateful that he has the determination of a mountain climber.  May he continue to fight his way uphill until he is deemed cancer-free.  And then, I pray for a beautiful and meaningful descent into his golden years.  A bountiful life for our precious Ty. 

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 get down on the dance floor here and there - I did not drink too much nor did I attempt any breakdancing or headspins (phew!).   I didn't trip over my dress or fall with a drink in hand either.  It was really quite tame :)  I know I said this already, but everything about the wedding was so beautiful and so tasteful, nothing short of what I would expect from my Linda Love.  She was stunning, gorgeous, graceful and elegant.  They are both so obviously in love they had me smiling all night long.  I am still thinking about what fun we had and how nice it was to take a break from Ty and Gavin.  As much as I want to be with them every second of every day, it's not until you spend a night apart that you realize how nice it is to escape our reality once in a while. 

Ty will be attending his first day of preschool tomorrow.  I am so excited.  One of my closest childhood friends is in town from San Diego and she spent the day running errands with me (i.e. the quitessential trip to the supermarket) and she also came with me to visit the school and allow Ty to meet his teachers in advance.  Oh what a magical place that is!  I am very excited to give this a try.  Ty will be in a class with 10 other students, all of whom are three years old.  I am the only mom who will be accompanying my child due to his disabilities, but I look forward to the day where I might be able to leave him on his own for an hour or two.  That kind of independence would just show such strength.  As if Ty truly prevailed!  I can't wait.  Ty's physical therapist was here today and she feels he will be there in not time, that he's doing amazing. 

The only concerning turn of events today was how much he vomited today.  He got sick in the morning, then again at the school right after I finished telling his teachers how rarely he throws up these days (isn't that always the way?).  This led to a severe lack of appetite all day, but I kept his juice cup filled at all times and got him to eat a very small piece of cheese and a very small piece of buttered bread.  It's just so challenging to keep up his caloric intiake when he feels too sick to eat.  I don't know what happened today, but I m going to pre-medicate before we go to the school tomorrow to avoid another episode.  I just want my poor baby to feel all better all the time.  PATIENCE!!! 


In this video from just the other day, Ty says "I'm beating up cancer and I'm winning!"  You sure are, baby boy.  Look at you now you amazing little man.  I love you infinity. 

Thank you, everyone, for keeping me going and reminding me how important it is to take adantage of these wonderful days we are having.  Goodness is all around us.

Saturday, September 17, 2011

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 that she gave me the okay in advance ;)

I want to thank all of you who commented here and on Facebook about my post yesterday.  I am still smiling over that spiritual night we shared with Ty.  It was very special and I'm happy I was able to share it with you all.  The support I get from everyone is so uplifting and I don't know what I would do without you.

Here is Gavin.  We visited with friends recently and he found some of Eva's dress-up items.  I am so happy he's mine :)  He can make anyone laugh, even during the toughest times. 

Friday, September 16, 2011

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 before.  Low and behold, it was on September 15th.  "Oh no!"  I thought I must have missed it because it was already so late in the day, but then I saw it wasn't to begin until 7PM.  The fact that I came across this note on this very day, there was no doubt in my mind that I had to go.  I told Lou that I was taking Ty to a healing mass at Mount Alvernia at 7PM and without questions or hesitation he said he'd meet me there after work. 

It was a totally gross and rainy day.  I recently had my car washed and there must be residue on the windshield from waxing or something because I had a terrible time seeing through my windsheild the entire way there.  It was dark, my windows were cloudy and it was a miserable drive that took more than a half hour.  Then, when my navigation told me I was two minutes away, I noticed there were sunbeams breaking through the clouds and illuminating the tops of the trees while the rain continued to pour down.  I swear to you, there was this one spot in the sky where it looked like the rain had stopped and the sun was shining and I smiled to myself... "wouldn't that be something if the church was over there? Oh, please let it be over there!"

There should have been an opera playing in my car as I got closer and ultimately pulled into the driveway of this church.  What a beautiful, serene and spiritual place!  It was an adorable church set back on acres and acres of green lawn and surrounded by trees. I started to tear up when I saw the amazing sky blazing with a fiery setting sun and I told Ty that it was all for him.  The very first car I saw was Lou's car, and when we stepped out I saw it.... the most incredible rainbow.  It was so bright!  So magical!  It was the very first rainbow Ty had ever seen in his life; it reached way up into the sky, and perfectly centered in the middle of the arch was a beautiful white statue.  I wish I could have captured it on camera, but it was way too big.  Besides, it was supposed to be too big for a picture.  It was too powerful to be captured like that.  But, I will hold it forever in my heart.  This tiny piece of the rainbow doesn't do it justice, not even remotely, but I know you'll understand. 


A woman who was getting out of her car at the same time said to us... "Wow!  Now I don't believe that is a coincidence."  And I said, "no, I don't believe it is."

The church was tiny.  It was painted all white inside and walking in I felt as if I was entering a very special place.  To put it simply, I felt like I was supposed to be there. My eyes just kept tearing up because I was just feeling so many different things it's hard to even put into words.  Lou and I were pretty much the youngest people there, and Ty was the only child.  All eyes were on Ty, and all I could think of was how grateful I was because I knew every person in that room - whether they had cancer themselves or if they were there to pray for someone they loved with cancer - every one would also say a special prayer for the adorable little boy who was in that room tonight.  The pastor looked our way quite a bit and I felt as if he was putting a lot of his energy into Ty as well.  It felt good.

Sure, Ty whined here and there during the service, but he was really such a good boy.  He was very tired because it was a late mass but he stuck it out for almost the entire hour.  He received the annointing oil on his forehead and hands, and we decided to leave a few minutes early because he was falling asleep.  Upon sneaking out during the closing song, a woman followed us into the foyer.  She said... "you're going to think I'm crazy, but I just had to share this with you..."  She went on to tell us about a segment on Dr. Oz and she told us to please look it up because perhaps it could help Ty.  Then she said the following statement, and this is what I consider another amazing sign of hope:

"I don't know what his diagnosis is, but I want you to know - and I promise you this - miracles happen.  I had metastatic breast cancer that spread to my spine and today it is GONE.  It's a miracle."

I don't remember what else she said, and I don't think it was the Dr. Oz segment that I was supposed to hear about.  It was the simple statement about her miracle that I carry in my heart tonight.  There are two reasons why it was so powerful.  First, because in December we were told Ty's cancer had spread to his spine and that there was no hope for a cure.  It has since stopped growing in his spine and completely baffled his doctors.  Second, because when Ty's cancer metasticized in June, our neurosurgeon used an example of breast cancer when he said, "if breast cancer metasticizes into other areas of the body, there is simply no hope for a cure.  Ty is in a similar situation because he has two new tumors in a different area of the brain, but I think with surgery I can give him a good summer." 

Miracles DO happen.  I BELIEVE!  When I heard the words metastatic breast cancer and spine come out of that beautiful woman's mouth I couldn't say a word because I was going to burst into tears.  I wanted to tell her that Ty is a miracle, too!  That he was also disgnosed with lepto-meningial disease that has since disappeared, but I couldn't get the words out.  It doesn't matter.  What was supposed to happen in that exhange happened.  I received the message I was supposed to recieve and it has calmed my spirit and allowed my soul to rest easier tonight. 

On our way home, I called Lou to discuss what we should pick up for dinner, and he asked me "isn't the moon amazing tonight?"  I couldn't see it.  It wasn't until several minutes later that I turned a corner and practically jumped in my chair because there it was, hanging so low and so bright.  What a beautiful full moon - I hope you all saw it, too!  I promised Ty we could stop at a candy store and no matter how tired he was he didn't forget about that.  I wasn't familiar with the area so I couldn't find a CVS or anything but I did stumble upon a Chuck E Cheese.  I hadn't been to one of those places since I was a kid myself, but I asked Ty and he wanted to go!  We got four tokens, played four games, and he won enough tickets to claim a piece of.... CANDY.  How perfect, right?  Best dollar I ever spent. Goodnight and God Bless.

Believe.  :)




  

Wednesday, September 14, 2011

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 sweetest poem that my friend wrote for Ty in honor of Pediatric Cancer Awareness month.  I asked her if I could post it here.  Thank you, Laura!  This is so thoughtful and inspirational!

A Real Superhero…SuperTy


There are so many things to think about, in the midst of the month of September,
This month prompts so many thoughts and so many things we want to remember…


This year, in particular, we think of the 9/11 attacks,
Marking the 10th anniversary of loved ones lost that families will never get back…


To think about it deeply, that it has been a full 10 years,
Fills my heart with sadness, my head with angst and my eyes with heartfelt tears…

September is a special month, bidding farewell to hot summer days,
School starting, warm clothes and much more, including burning leaves in a sniffable blaze…


September starts to welcome autumn as we see trees in their innocent bareness,
But one thing you may not already know, it is the month of pediatric cancer awareness…


For every kid diagnosed with cancer, each of them fighting throughout every day,
For these kids battling this disgusting disease, I ask that you continue to pray…

If you asked me last year what September would hold, I’d say “putting my flip flops away?
But now because I’ve been made aware, I have something different to say…


One story that has inspired me is of a 3-year old toddler named Ty,
A real life Super Hero who lives in New York, and there are so many reasons why…


I think about him throughout each day, my friend’s child who is beating all odds,
Thanks to an incredible will, an amazing family, and thousands of people praying to God…


Ty recently celebrated his year anniversary, 365 days of fighting,
And his mom has spread the word to the world through her amazing and heartfelt writing…


On October 4th of 2007, Ty’s journey on Earth began,
And pretty soon thereafter, his little brother Gavin joined the clan…
A wonderful family with a fantastic bond, enjoying a happy, carefree life,
Until they got the news in August 2010 which cut through their hearts like a knife…


Their perfect baby boy with those beautiful curls and kind kissable face,
Was diagnosed with a rhabdoid tumor, at his toddler sized skull’s base…


And so a new type of journey began for Ty, a journey that will prove to be long,
The journey of a kid fighting cancer, one that no family should have to go on…


Was this what God had intended for them, was he testing their strength and their will?
Maybe that is simply the case, but no family should be tested that way even still…


They started their fight most immediately, Ty had his first tumor resection,
And while I don’t know the medical details too well, I know he had to fight constant infection…


That September, when most kids were off to pre-school, playing with markers and glue,
Ty and his family spent most of the month being cared for in the PICU…


In October, Ty was still smiling, as he celebrated turning 3-years old,
Well now he was a BIG BOY, and he’d continue to fight big and bold…


He started his chemotherapy, I’m certain there were several ups and downs,
But truthfully in every picture his mom posts, he still hardly ever frowns…


This little boy, so active and happy, from a baby and as he’d grown,
Had been attacked by this horrific disease, and soon couldn’t walk on his own…


Another round of chemo for Ty, and the poor child gets another infection,
Most of November spent in the hospital, while Ty bravely fought this harsh rejection…


There was terrible, heartbreaking, soul-crushing news that was delivered to Ty in December,
Ty’s doctor’s said just six weeks to live, news that Ty’s loved ones will always remember…


But having followed this young boy’s story, and knowing the spirit of his parents (my friends),
I knew that this would definitely NOT be where this heroic boy’s story would end…


In the midst of those few weeks, I know his parents’ minds would wander and roam,
But somehow this amazing family pulled off packing up and moving to a new home!


Make-A-Wish Foundation was there for them, a trip to Disney was planned for their boy,
A time for this Super Hero and his family, to be sure every day was filled with joy…


And I have to point out that every picture, which exampled their trip more or less,
Showed that Ty along with his family, shared MANY moments of happiness…


Christmas was a cherished time, despite the prognosis with what the family was dealing,
And in January a third shunt revision, and continued prayers for Ty’s healing…


With all the love that surrounded him, Ty’s clinical state began to improve,
But in February a major setback, and he had to encounter tumor resection #2…


Springtime was approaching, and his battle continued passed doctor expected length,
And just as God had intended, he continues to prove his unparalleled strength…


Radiation started, and a glowing smile still showcased on this young boy’s face,
Not only will Ty win this marathon, but he’s winning each qualifying race…


His parents said May was a tough month, another infection for this poor lil’ guy,
But what the doctors were quickly realizing, is that nothing can stop Super Ty!!!


Another shunt replacement on the books, then in June he completes 6 weeks of radiation!
His parents made it very clear, this was GREAT reason for GREAT celebration…


But the celebration didn’t last too long, when two new tumors were soon discovered,
Tumor resection #3 was had, and he bravely and strongly recovered…


As if SuperTy hadn’t been through enough, he began having trouble with his eyes,
When would God give this child a break? When would he help this tough little guy?


Soon his eyes began to improve, and a new course of radiation began,
I swear inside this child’s mind must be constant message of “I KNOW I CAN!”…


And right around his year of cancer anniversary, another round of radiation complete,
A very POSITIVE MRI was done, could this be something he’ll beat?


While we may not know what each day ahead holds, for anyone’s life I would say,
This I can tell you with complete certainty, Ty’s is beating the odds every day…


Superheros and balloon filled rooms, stuffed animals and hundreds of toys,
Homemade costumes and lollipops galore, all sent with love to this little boy…


I’m inspired by Ty every single day, I can’t even put into words how much,
I’m inspired by his parents and brother and by everyone that his soul does touch…


I’m inspired by every child out there who has faced all of cancers’ horrific things,
Those who have beat it, those still fighting, and those now angels who earned their wings…


Miracles can happen, and Ty has proven this day after day,
Miracles WILL happen if you carry utter strength and always pray…


When you go to bed tonight do pray, cuz Ty’s case is sadly one out of many,
One person out of every 330 will be diagnosed with cancer before age 20…


This statistic is not to scare you, rather to inspire everyone who reads,
These kids don’t need new Xbox games or the coolest clothes, just prayer is all they need…


So for Ty and every cancer patient, be with them until their prayer has a great answer,
Be with them each and every step of the way, as they fight to “beat up their cancer”!

Tuesday, September 13, 2011

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 stopped worrying and took advantage of that time by going through piles of recent hospital papers.  I wouldn't say it is 100% organized now, but I have nice folders and neat piles to refer to when needed.  Yay!

Lou and I are thinking about planning another family vacation around  Thanksgiving.  Something with a beautiful coastline and sunny skies.  We want to do all we can to take advantage of Ty's health and to celebrate everything he has overcome so far.  Of course we want some special time with Gavin, too.  At the time Ty was diagnosed, Lou and I had just booked a trip to Mexico for our anniversary.  Of course we cancelled, but we are thinking maybe that is where we will end up with the boys.  I hope so!  I am excited about the possibility of any vacation whatsoever.  Just a little scared about putting Gavin on a plane again after the horrific display of behavior to and from Disney last December.  Oh boy, that was bad. 

Tomorrow morning Gavin will be getting evaluated by Early Intervention for speech and behavior.  He is two years and five months and he has very few words, so this is long overdue.  I know he is totally fine, just slow to speak, but if there are services available that can help him along I am all for it.  As for the behavior, I am also in agreement.  He has just started to act out more frequently, especially against Ty, and I think it is a combination of being frustrated because he can't quite communicate, and being the sibling of a chronically ill child.  He is becoming more and more aware of Ty's situation, and I think it is taking a toll on him.  Don't get me wrong, he is wonderful, perfect, and tremendously resilient!  I just want to make sure he continues to be okay through all of this.  Here's the big goofball wearing my sneakers yesterday.  Love him so much!  Our Baby GaGa.

I'm gonna call it a night.  Lou is also awake and I'm going to try to <gasp> spend some quiet time with him.  Hopefully I will sleep well after winding down with a glass of wine and some mindless TV.

Insomnia

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 the original tumor, which looks to be inactive since radiation was completed in April... and there's no reason to believe that the two new tumors haven't met the same fate. Now we are treating him with chemotherapy to attack any remaining microscopic disease, and praying with every ounce of our being that it never ever, ever, ever, ever recurs. I have seen the power of prayer during my darkest days. Please keep them coming.

Ty will be getting a lot of therapy at home over the next year, and we even got the green light from his doctor to enroll him in a small pre-school program.  We are finally breaking free of the bubble we have been in over the past year, and I think it is going to work wonders on Ty's esteem.  I simply can't wait to see him singing songs with classmates again.  Of course, I will stay with him in class when all the parents leave because of Ty's physical disabilities, but I don't think three-year olds will be put off by that in any way.  They will love meeting Ty, and he will love meeting them, I am sure of it.  I feel the sensation of the bubble popping and I am as excited as Ty and Gavin are when I get crazy and blow bubbles in the house for them :) 

In addition, Ty is beginning a rigorous schedule of at-home physical therapy, occupational therapy, speech/language and special education.  This is going to be a busy household again!  You should have seen him with his physical therapist today, he was such a sport!  I am excited and I have visions of a more active school year with a house full of laughter.  Now I just have to figure out what to do with Gavin :)  I am so afraid of germs, I think I will wait until at least January before I sign him up for anything.

Anyway, it is taking me a while to address the title of this post.  I have been battling insomnia lately and I can't figure out why now more than usual.  Every night when I try to sleep of course I worry about Ty (nothing new there), but lately I have been consumed with thoughts about a handful of other cancer kids who have crossed my path over the past year or so.  Some that I met during our very first hospital stay, some that I shared a room with on M9 at MSKCC and some that I met more recently through various acquaintances.  I have been bothering my husband with my worries, too... "You know who I haven't seen at the hospital in a really long time?"  I name a couple of kids, describe them to Lou, and he reassures me that this one doesn't live in New York, or that one may be done with treatment. 

Maybe I'm so restless because of pediatric cancer awareness month.  I have been actively reading up on various causes and trying to share more information so maybe that has my mind racing a bit more, but I don't see why I am losing sleep over it so much now?  When things at the Campbell house are better than they have been in over a year!?  I don't know, but I am reaching my limits on worry in general.  I think I used to sleep better in a hospital bed than I have been at home lately.  It's just so damn unfair that so many kids are suffering every day.  They don't get to be kids, there is so much hurt among the most undeserving population of all and it's really getting to me! And, I guess part of me is just living in fear, waiting on pins and needles for something to go wrong for Ty again.  The numbers aren't in our favor and that scares me, of course.  But then again, the numbers never were in our favor and Ty Campbell pulls through when he's not supposed to time and time again. 

It's midnight and once again I'm pretty wired.  I think I'll make some tea.  Last night, Ty was totally restless, too!  I think it might be contagious because I'm lying there next to him.  We were both awake watching cartoons from 2-4AM.  I hope that doesn't happen again tonight. 

Before I forget, I have some good news to share!  Ty has met another huge milestone this week.  I removed his special needs bathing chair from the bathtub, and he has been taking baths with Gavin again.  It has been such fun watching the play in the tub together, neither of them want to get out!  Tonight they were both totally pruned.  Check out the 'do. 



You can be the match!
Here's something you can do.  Over 13,500 kids will be diagnosed with cancer this year.  The majority of whom will have Leukemia or another blood cancer where a bone marrow transplant may be required.  Please join the bone marrow registry and order a cheek swab kit.  It is so easy to do, it is free, and it just might save a life.  Thank you :)
http://www.dkmsamericas.org/

Goodnight everyone.  Hopefully some tea will do the trick.

Monday, September 12, 2011

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. Giuliani. December 31, 2001.

Thursday, September 8, 2011

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 dedicated Mommy again!  How nice!

Today was a little off for Ty, too.  He threw up twice from his daily chemo, but he was otherwise fine.  It happens at random, and really he is otherwise doing just great.  We had a really nice, quiet day in every other respect.  We even skipped our daily trip to the supermarket without much fuss from Ty (although we did go to CVS) and that was a huge victory for me.  I am so sick of that routine. 

Tomorrow we will be at the hospital again for a quick infusion (Avastin).   I kinda wish I let Ty keep his "tubies" in his mediport from earlier this week so he wouldn't have to get those giant needles again - he hates it so much - but it increases his risk of infection when he is accessed like that and limits him from getting a proper bath.  So, he will be upset about that, but that's okay.  Everything is okay now that his scan was good.  Everything is okay because I am still fluttering about my day dreaming of Derek Jeter ;)  Everything is okay because I believe Ty will continue on this road to recovery with all my heart and soul. 

I didn't get any additional photos from yesterday yet, but I will be sure to post the as soon as I can.  Thanks for all of your comments here and on Facebook.  Yeah, it was pretty amazing :)

I am exhausted so I need to call it a day, but before I log off I want to share another statistic on childhood cancer because I am dedicated to being a voice and an advocate for all of these children and their families throughout the month.  During these 30 days, 1380 families will hear the devastating news "your child has cancer" and 210 children will take their last breath - their precious lives tragically stolen away.  I don't like to end on such a sad note, but the truth is beyond sad and in order to find a cure we need to drive awareness and increase the focus on the various types of cancers that specifically affect those under the age of 18.   Thank you for your support.  Hugs and Kisses from Ty.