My face is swollen.  My eyes are heavy.  I have been crying for what feels like an eternity.  But in between my tears, I have an overwhelming sense of freedom.  Today we were told that there are no more treatment options for Ty.  That his MRI Saturday night shows progressive lepto-meningial disease in three different areas.  Lou and I decided against surgery to fix Ty's shunt, and I am finally free from feeling responsible for whether or not he lives or dies.  Ty is in God's hands. No matter how many times I swore that I leave Ty in God's hands, I was always clinging onto him with every ounce of my being.  Researching.  Fighting.  Begging.  Doing anything in my power to find a way to save him.  Finally, I have exhausted my options and I am letting go.  I may be kicking and screaming, but I am still loosening my grip because I know that I have to.  We have tried so hard, for so long....

I am so tired from crying.  I am physically and emotionally drained.  Today I sat at Ty's bedside in the PICU begging God to stop your suffering, even if that means we have to let you go.  I have done this several times before.  After watching Ty get beat up and knocked out time and time again over two years, I can't even count how many times I have had this conversation with God.  Both Lou and I talk about this all the time.  Of course, we will never stop fighting for you.  Of course we want you to live, to be with us.  Of course.  But, if it means you are hurting all the time.  If it means you won't live a happy life, then what are we fighting for? We had another very difficult conversation with Ty's neurosurgeon today.  Let me back up to yesterday. Last I posted, we were in urgent care.  Ty's breathing and congestion wasn't improving and he tested negative for any common viruses or bacterias like the flu o...

MRI News Ty's bimonthly MRI scheduled for this morning has been pushed back until Tuesday.  He was doing great on Thursday, so much so that I decided to take him for a walk outside (it was a gorgeous day).  We drove to the Mid-Hudson Walkway for a nice walk over the river - Ty told Gavin to "be a good boy because we are doing sumfing special!"  I was so happy to be out of the house.  I was finding some zen until the ride home undid every bit of de-stressing that took place at the park.  I am afraid I may have had him sitting upright in the stroller for too long because he became so congested during the drive home I had to pull over three times in 20 minutes to pull him out of his car seat, give him chest PT and turn him sideways to knock some crap out of his nose and mouth to clear him a little better.  This is why we postponed his MRI for Friday.  We were hoping that he would clear up over the weekend, so we rescheduled for Tuesda...

Another great topic to talk about during childhood awareness month.  The MRI and the dreaded "scanxiety" or "scanticipation" that goes along with it.  Living a life where your child receives frequent MRIs is like watching your kid forced to ride a unicycle across a tightrope.  You have 60 days to practice before the big performance (I used a 60 day example because Ty's standard MRI's are spaced out every two months).  While your kid is in treatment/practicing you gain a lot of confidence.  You're shaky at first because the last time it was really scary, but now you are breathing easier and ready to prepare for the next one.  There's not much you can do to prepare your child, so you just make sure he or she finds ways to have fun during downtime (even though "fun" is more often defined as being sick from chemo).  You are still coming off the high from the good news you got after the last performance (or you are thinking about that one m...

We searched and waited for you all day.  I was so sure you were okay, but you never returned.  Your body was found in the stairwell, among those of the civilians you were trying to save.  I'm so sorry, Andrew.  You were a true hero.  Please watch over Ty. 

Gavin started preschool today.  He is so big for just three-years old!  He is going to the same adorable school that Ty attended. In fact, a week or two ago Ty overheard us talking about school and he said, “I think I have to go back to school soon, too!”  I told him he will go back to school soon, not to worry.  “Good, because I think they miss me.”  It makes me sad because Ty will not be going back to the preschool he loved so much, but I do think the at-home schooling mixed with the various therapies he will receive on school premises will be a good routine for him.  He received some awesome arts and crafts and an adorable backpack in the mail to get him excited for it.  Thank you! Would NOT sit still for the obligatory photo I suffered a few ice-picks to the heart when I entered the school and saw some of the children from Ty’s class (last year) all dressed up and ready to start their second year of pre-school.  Ty should have been with ...

I am so emotional, I can't possibly write something reflective or attempt to be inspirational.  Did you watch the Stand Up 2 Cancer telethon?  I am blown away.   Yesterday I wrote about two boys that we shared hospital rooms with and with whom I fell in love with over the past two years.  Taylor Swift just performed a song in honor of one of them (that honors all of our little fighters at the same time).  I didn't know this was coming at all!  Sometimes I check in on his mom's blog to see how she is "healing" (the wrong word, I know, but I am at a loss right now).  Never did she say anything about the fact that Taylor Friggin' Swift was writing a song about her little boy, Ronan!  In fact, his amazing mama is credited as a co-writer.  How Amazing!  It was the most beautiful, painful song.  Every word hit me so hard.  I can't stop crying.  All of it, the entire tele-thon, has touched every part of my soul...

When I decided to document various experiences throughout Ty's two-year journey in honor of pediatric cancer awareness month, I intended to include a post about what life is like for a parent "living" behind hospital doors.  Since we have been inpatient in the hospital for a couple of days now, it seems perfectly fitting to reflect on some day-to-day experiences here, in our home away from home. Here we are again.  In my closet I keep a huge duffel bag that we call "the hospital bag" because it always has a set of toiletries, PJs, change of clothes, etc. for Lou, Ty and I.  We have made ourselves at home, the big bag perched on the shelf and shuffled through constantly.  I recognized two moms in the halls that were here on my very first stay... they've been doing this even longer than me.  Now I'm one of those veteran moms.  There are so many new faces!  So many new kids losing their hair for the first time.  It makes me...

Ty’s first major surgery was on a Monday.  It was also the first day I ever posted to his blog.  When we left the hospital after we learned of the tumor, we were told to take our time in selecting a neurosurgeon.  It was suggested that we aim for a tumor debulking and resection within the next six weeks.  The cancer thought otherwise.  We were rushed into surgery just 12 days later.  My perfect baby who had no neurological issues suddenly began slurring his speech.  Then he couldn’t use a sippy cup and his mouth was feeling funny (or as Ty was saying, “my mouf peel punny.  My mouf not work.”)  The head pain began to affect him during the daytime, too, and it became unbearable.  After meeting with several renowned neurosurgeons, we selected the only one who provided us with a confident, less-invasive endoscopic approach.  The other neurosurgeons were looking to cut through several facial bones in order to get the best access to t...

I planned on writing a post that reflected on our experience when Ty had his first major surgery in order to continue recapping his journey during childhood cancer awareness month, but I think I need to save that one for tomorrow and share something else that is very timely.  I recently became friends with another mom who is walking in the same shoes.  She posted something on Facebook this morning that I wholeheartedly relate to, and I am so happy she did because it opened my eyes to why I have been feeling so depressed these past few days.  Her words allowed me to come to terms with my own feelings around the fact that school starts tomorrow and that makes me really sad. I want to post pictures of Ty on his first day of Kindergarten wearing a new backpack, a handsome outfit, standing in front of a yellow school bus.  This should be such an exciting time for us, and sad too, as we see our baby boy growing up and going off to his first day of school. ...

Ty was like any other child who is diagnosed with cancer.   At 2 years and 10 months, h e was 100% normal.   Childhood cancer doesn’t discriminate.   There is no known cause.   It strikes innocent children across all races, demographics, geographies.    One day a child is on the swings, going to school, playing with friends.   The next day he is fighting for his life.    He was and is the sweetest most beautiful little boy.  Watch this ten second video to capture all that he was then, pre-cancer, when all was right with the world.  I can't believe how much he has suffered since those happy days.  It just doesn't make sense how a little boy like this can have something so evil happen to him. LAUNCH THE VIDEO I often reflect on the months leading up to Ty's diagnosis.  I have always talked about Ty's terrible sleeping habits since the day he was born.  Maybe the problem with his poor sleep ...

Today Ty told me he wants to go to the sprinkler park and run in the sprinklers.   I swear, sometimes I think he forgets his limitations and what he has been robbed of.   It is a child’s right to run through sprinklers in the summertime.   To sit in circle time at Kindergarten.   To hit a baseball.   To have a best friend.   A girlfriend (or boyfriend)!   To go to college.   To get married.   To have kids of their own.   We need to do everything we can to help save these little cancer warriors and to protect them from a lifetime of chronic illnesses or handicaps.   September is Childhood Cancer Awareness month.   I looked back to see what I posted on September 1 st last year.   Sadly, the stats haven’t changed.   I still get so discouraged when I see all of the displays with pink ribbons year-round.   Not because I don’t believe breast cancer deserves the recognition (of course not!) but because our kids do...

Our next run to fund childhood brain tumor research is set for October 13th in Prospect Park, Brooklyn.  It is a 10K that we are doing along with Elizabeth's Hope ( www.elizabethshope.com ) in honor of Ty and Elizabeth Minter, a beautiful girl who lost her battle to rare pediatric brain tumors just months ago.  I have detailed instructions on how to join Ty's team and begin your fundraising efforts.  Please email us at tylouiscampbell@gmail.com and I will share those details with you.  As always, there is no minimum fundraising requirement and we welcome everyone and anyone to join us.  The more the better!  We had such an impressive group at the 5K in July and we would love to have even more this time around!  September is Childhood Cancer Awareness month.  A perfect time to do something for the cause!  WATCH THIS I am so inspired by this video that was posted by another Cancer Mom yesterday.  This man's cause is...

Look at this incredible video of Ty kicking the seat in front of him in my car.  This is from yesterday afternoon.  He is finally feeling better and making some great progress!  This afternoon I convinced him to come in the pool with me again, and he was moving his arms and legs so much.  I saw a lot of his stomach muscles working hard, too.  I am so proud.  CLICK HERE TO SEE HIM IN ACTION September is Childhood Cancer Awareness month.  You'll be hearing a lot from me starting Saturday.  Please help us to spread awareness.  Photo Credit: People Against Childhood Cancer

I know I have said that this whole journey has been such a roller coaster, but it's been quite a while since we had such tremendous ups and downs over the course of just a few days.  I guess it's just a reminder to us that we are still on board with plenty of dips, turns and loop-dee-loops ahead. I felt like I was on the crazy train instead of a roller coaster this time, though.  Lack of sleep makes me lose my mind almost as bad as Ty lost his on Tuesday night/Wednesday morning.  I waited to share any updates because I didn't want to worry you all!  Today I am fine.  Yesterday was a very good day, too.  We are getting back to normal in so many ways.  I will quickly retrace the course of the past few days to loop you in on Ty's progress. On Wednesday I was up and caring for Ty and Gavin on about 45 minutes of solid sleep.  Ty had terrible head pain throughout the entire day... and it had been getting progressively worse over the course of two w...