Showing posts from May, 2012

Where does the time go?

I was filling out paperwork for Ty and I realized he is four years/eight months old.  I can't believe it!  He is closer to five than I thought - so much!  Five just seems like such a big boy!  I remember Ty's neurosurgeon telling us a funny quote from his then four-year old son (who, undoubtedly, also believes five to be a very big number).  When I asked him how old he was, he said five without missing a beat.  His dad corrected him and told me he is four, but that he really can't wait to be five because it just seems so exciting.  He once told his son to settle down soon because he only has 15 minutes left before bedtime.  His son responded with a plea, "No!  Can I please have FIVE more minutes??  FIVE, pleeezee??"  How cute. So, Ty will be five in a few months.  I don't know how I feel about it.  Cancer aside, grasping how fast my children are growing is actually depressing me a bit.  I'm so proud of them both, but I also feel so desperate because I wa

Yay for poop

I'm sorry about the mildly gross title of this post, but I am too excited for Ty not to share. Lou gave me a much needed break this morning and took the day off to spend with Ty at therapy. When he called me and joked about how Ty pooped in his diaper on the way to oxygen therapy, I thought that it really was just a joke.  But then I realized that he really did, and that's amazing.   Since early March, Ty hasn't been able to go to the bathroom because his muscles are all so messed up. Every three to four days I give him a suppository and he screams about it every time.  He absolutely hates it.  So, knowing that he went on his own this morning is something to be very excited about.  It means Ty may regain another ounce of normalcy in his life.   Yesterday was a great day.  Ty was such a good boy in the oxygen chamber, he didn't cry or carry on. Then he worked really hard in therapy.  He was showing off how loud his voice is getting.  He was so proud of the movemen

Wonderful weekend

Before I share a quick update on our weekend that was filled with smiles, BBQ and sunshine, let me just acknowledge my utmost respect and appreciation for our soldiers and veterans.  There is nothing more honorable than serving our country and maintaining our freedom.  I am forever grateful.  God bless all of our courageous soldiers overseas, the families who miss them, and those who made the ultimate sacrifice for this beautiful country so that you and I can be free each and every day.  This Memorial Day weekend was filled with blessings for the Campbell family.  We were surrounded by friends and family who came to our home with prepared meals and bags full of loot that would keep Ty smiling.  And, smile he did.  He was happier than I have seen him in a very, very, very long time.  Lou, Ty, Gavin and I were pampered for three days straight.  It was such a treat.  The greatest treat of all was that Ty was happy.  Here are some adorable pictures of my sweet, sweet boys.  Those sm


I've been exhausted the past two weeks, so I haven't had the energy to post much.  In fact, yesterday I was told by three different people that I looked either "tired" or "exhausted".  I wanted to be insulted, but I couldn't because I knew they were totally right.  I am spent.  I tried to fix the situation by going to bed very early last night.  9:30!  It would have been heavenly, except I couldn't actually fall asleep until after 11:30, and then Gavin was up for over an hour in the wee early morning.  I can't win!  Regardless, I gave myself some extra time for makeup this morning.  I wanted to look more presentable and I thought I succeeded until someone just told me that I look "beat up."  Hmmm.  Not the look I was going for :)  TGIF.  Hello long weekend! Ty has been doing well.  He has two issues right now, and they are minor.  The first being his emotional well being.  He is simply down in the dumps.  I know it will pass, and soon

Back to the grind

Ty is totally amazing.  Today was awesome.  Yesterday, too.  Tomorrow we go back to the grind.  We will return to our routine oxygen treatment in the morning, and possibly school/therapies in the afternoon (although I'm considering letting Ty play hookie for one more day so we can have some fun). We got home yesterday evening and a bath was the first thing in order.  We needed to wash all of the surgical grime that covered our poor baby, and he was happy to do it.  Despite the fact that he just had surgery Saturday night, he is feeling terrific and his pain is practically non-existent.  Two weeks ago we would never be able to move him or pick him up without him wincing in pain.  Today he is so much better off.  It is unrelated to the shunt surgery, but probably due to the improvement we saw in the brainstem area during Ty's MRI Wednesday.  The swelling is gone (thank you hyperbaric oxygen chamber!) and he is like a new kid.  Finally, he is feeling good.  Awesome, in fact. 

Emergency - Ty in surgery

I wrote this post last night, but couldn't get online until this morning.  Ty is awake.  He is feeling okay.  No improvement in his eyes yet, but that should come quickly.  Here's what happened. The shunt.  Need I say more? Today, I hate my life.  I hate how cancer destroys everything even when Ty is cancer free.  We had so much planned for this weekend.  Fun plans for Ty and Gavin so we can pretend that we are a normal, happy family before the next week filled with oxygen treatment, needles, meds and therapies started up again on Monday.  It was such a beautiful day today.  Lou allowed me to sleep late with Ty while he went out for breakfast pastries.  My mom was visiting and she had coffee ready when I came downstairs around 8:30AM.  I dressed Gavin in the most adorable outfit, ready to celebrate field day at his preschool (the same one that Ty used to go to), and my sister drove all the way from Long Island to spend the day with me.  I felt really good this morning and
Lou took this last night.  Me and my beautiful boy.  I am so in love.  Ty's emotions are still running high.  He cries so often that my stress level is completely maxed out.  Luckily he is still young enough that he doesn't stay depressed for long, and he isn't fully aware of the impact this latest setback has had on him.  When he gets sad he can often be diverted and he still smiles easily (all I have to do is make a joke about something gross like burps, farts or boogies and he is laughing himself silly).  Unfortunately for me, those diversions usually require physically draining activities on my part, like a trip to the candy store, a supermarket run so Ty can taste-test the grapes himself, or a drive to the Red Rooster for a vanilla cone with rainbow sprinkles that are embedded in every crevice of my backseat.  I guess on the plus side, I am happy to report that his crying has gotten much stronger.  Much louder.  That means his oral motor skills are improv

Relief and Hope

What a long day we had today.   But I certainly can’t complain because Ty’s MRI was beautiful.   The swelling in the brainstem area is gone.   The lesion in the brainstem area that appeared to be a result of radiation has improved.   The spine is stable with no new evidence of disease.   That means it’s clean, stable, NED.   We are thrilled. When Lou was reviewing the scan with Ty’s doctor, he asked if he was surprised and whether or not he felt it means Ty may be on his way toward being cured.   I liked his answer.   Always the conservative (as he should be for obvious reasons), Ty’s doctor said that he learned not to be surprised by any feat of Ty Louis Campbell, and that yes, with every clean scan we get closer to the two-year “NED” mark, which is when he begins to breathe a little easier.   We are almost halfway there and he admitted that he never – in a million years – would have imagined he would be having this conversation with Lou.   He said none of his colleagues would ha

Big Day Tomorrow - bi-monthly MRI

MRI DAY TOMORROW: It's here again.  Every two months Ty is scheduled for an MRI of the full brain and spine.  I know it doesn't seem like two months have passed because he has had a couple of brain MRI's in between, but Ty's last bi-monthly MRI in March was pretty much the last time he was feeling good.  It's when we made the huge mistake of feeding the trolls by bragging about how great he's doing.  When we were singing from the rooftops about another clean scan and showing off his progress by having him walk across the playroom for his nurses.  My prayers for tomorrow are coming from the center of my bones because that's as deep as I can visualize my energy.  Lou and I are filled with anxiety.  I can't wait for tomorrow.  I am eager to hear that there are no signs of disease in Ty's brain or spine.  I want to know for sure that we should keep doing what we're doing, even if we don't get the answers we are longing for (meaning, if it'

I love being a mom - but I don't necessarily love mother's day

I absolutely love being a mom.  Ty and Gavin are my whole world.  And I have been trying to enjoy them as much as possible since we got home from the hospital.  On Friday I was trying to figure out how long we've been in this exhausting routine at home (meds every four hours, waking up for oxygen treatments at 5:30AM, going to school/therapy every day, driving.. driving.. and more driving..).  Can you believe it's only one week down?  One week!  It feels like an eternity.  But then again, all of this cancer stuff feels like it's been an eternity.  I decided that I don't necessarily love Mother's Day.  It's very nice and very important, but I do find it a little sad despite my wonderful husband's efforts to make it the greatest, most relaxing day for me.  I found myself thinking mostly about my cousin Mary, whose daughter died after only 90 days on this earth.  I was worried about my own loving, amazing mom, because this is her first Mother's Day withou


This video is my new favorite.  I posted it all over Facebook, too.  I hope you like it :) STRONGER - Seattle Children's Hospital

Better today

Ty woke up really sweet and happy this morning.  He slept well last night.  Lou and I got a couple of hours of peace and quiet last night.  Everything seems so much better now. I am happy to say that we began to taper his pain medication today.  Instead of every four hours, we stretched it out to every six.  After a few days at this level, we will continue cutting down the dose every few days.  I hope and pray we can wean him off his pain medication, but it's going to be a very slow process because we don't want him to be uncomfortable.  I just don't like the idea of my four-year-old on daily oxycodone or morphine anymore.  I want him to get some energy back so he can withstand more physical therapy.    His nagging head pain is so much better, but now he suffers from pain related to muscle spasms and increased tone.  Especially in his neck, making it difficult to turn his head or sit comfortably.  We are seeing improvement in this area, though, and it is very promising.

Trying to keep my head up

Being home has been nothing short of depressing.  I wish with all my heart that I could be more positive, but it's the truth.  It's been really hard watching Ty like this.  Facing the new reality, yet again, that his life is so incredibly messed up.  He is so sad, too.  He cries all the time, but he also smiles easily.  That's just Ty.  He will belly laugh at the silliest joke and the most meager attempts at being funny, but he may also break down into hysterics at any given moment.  It's been tough.  I can't imagine how he must feel, being back home surrounded by all of his favorite things that he can't play with anymore.  Anything but cancer, right?  Well. Lou and I certainly don't say that anymore.  It was one year ago yesterday that Ty's MRI confirmed two new lesions in his cerebellum that were growing rapidly.  That was one of a dozen most difficult days we faced during this journey, but learning about his radiation necrosis was even more difficul

hot lava

When I saw this I smiled at the memories because, of course, I played  Hot Lava ,  Don't Touch the Ground and SHARK! as a kid - jumping from couch to couch with my friends.  Then I cried a river.  This is all I want for Ty.  A fun childhood.  In his four years, he has smiled through the pain and we have tried to make his life as special as possible, but I certainly wouldn't say he's had a fun childhood.  He has been robbed of his childhood altogether and forced to be brave.  To grow up way too soon.  To endure daily suffering.  Whan drawing his blood yesterday, the nurse felt terrible about sticking him.  She said something like, "I'm sorry, I understand, I still get very upset whenever I have to get a needle and I'm fifty!"  I would guess that most adults have had less needles in their lifetime than my four-year-old angel baby.  I know I have.  Poor Ty has had to grow up so much in his short life.  Ty is in the oxygen chamber right now, he didn&#

> 36 hours - but who's counting

Lou spent the day with Ty today, and I had a much needed day at home to get things in order for Ty's big arrival!!  We will be doing our normal routine at the hospital tomorrow (oxygen at 8AM, school at 10:30, lunch at 11:30, PT and OT at 1:30, school again at 2:30 and speech at 3PM) then we have just one more night before we discharge upon leaving for oxygen treatment Friday morning.  Needless to say, I am very, very excited.  I have so much hope that being home will accelerate Ty's improvement because of all the good it will do him psychologically.  Ty's head pain is really getting better.  Lou and I believe that he is virtually headache free these days with the exception of neck pain and muscle spasms.  We are planning on starting a very slow taper on the pain meds so he can get back to normal over time.  The only two things that have us worried now is (1) he has vomited about once a day for the past few days, and (2) at times he is still sweating profusely which is so