Tonight I was staring at Ty's sleeping face and thinking about how lucky I am to have him.  And, how much I want him to enjoy life.  It occurred to me how much fun I've had, always, and how incredibly blessed I've always been.  I thought about how I took everything for granted.  I have no regrets for carelessly enjoying life.  It's more like I reflect with a wry smile and find gratitude for all the fun I've had in my previous life.  And all of the fun I intend on having in the (near!) future.    I always knew I was lucky to have my loving family and friends.  To have my health, my education, my opportunities.  But still, I always wanted more.  I worked like crazy.  I stressed over money.  I wanted more time to myself.  I wished for everything in life to be just a little easier.  It still amazes me that it wasn't until my son got cancer that I stopped wanting.  That I understood Psalm 23.  That I even read Psalm 23 with understanding and depth.  Of course I

Gavin and I had a wonderful weekend together while Lou was with Ty at the hospital.  We went for a road trip to New Hampshire, and it couldn't have been a more beautiful weekend for it.  I'm so, so glad that I went.  I was very unsure if I was up for the trip because I've been so physically exhausted, but mentally it was really good for me to spend quality time with my cousins who I haven't seen in so long.  I had a great time, and I left with the most beautiful, sentimental gift from my cousin Susan.  It's a prayer card that has a very long, very special history and I will cherish it. My cousins grew up in Wolfeboro, New Hampshire and I have so many fun memories of visiting when we were kids.  Being back there this weekend and being surrounded by all of our beautiful children reminded me just how much fun it was being a kid... dirt under my fingernails, scraped knees, messy hair and belly laughs over the silliest things.  I smiled a lot over the past two days :) 

Medical updates I wanted to post last night because so much has happened and I had so much on my mind, but Ty said "I want to snuggle" and to my complete surprise fell asleep with him at 9:30!  I woke up to regular hospital stuff throughout the night, but was otherwise too tired to get up and we both slept really well.  So good, in fact, Ty did NOT want to wake up for hyperbaric oxygen therapy today.  He started telling me last night that he doesn't want to go in the rocketship anymore.  That he doesn't want to be in the hospital anymore, either.  It breaks my heart.  But he is improving, and that keeps us going.  We had a similar routine every day with radiation treatment, and that was a lot worse.  We will get through these treatments, too.  He really doesn't mind once he's in the chamber, and the medical team there are very, very good with him.  He is in great hands. His head pain is really getting better.  Finally.  He was suffering every single day

What a rough night.  Not for Ty, don't worry.  Somehow he is sound asleep through what has turned out to be one of the worst nights I've had at Blythedale so far.  I never know what timezone "blogger" thinks I'm in, but it is 3:35AM and it is simply impossible to sleep.  I wish I never took an Ambien because it only amplifies the fact that sleep is not happening tonight.  The small boy who shares a room with us is ventilator dependent.  Tonight, one of his machines has been malfunctioning.  It is beeping a series of five notes, very loud, every single seventeen seconds for the last hour and nine minutes.  I learned that when I'm tired enough, I can actually get to the cusp of falling asleep in less than seventeen seconds, only to be drawn back out of sleep by the incessant beeping every single time.  This is chinese water torture.  I googled it and found this amazing image that perfectly conveys what I'm feeling right now. by Yanik Chauvin But, I

I saw this posted to another cancer mom's Facebook today and I watched the video.  I didn't expect for it to hit home so much.  This couldn't be a more perfect depiction of what life has been like for me, Lou and Ty on this most painful journey.  It's 100% true and I can relate to every word written.   WATCH THE VIDEO HERE My days of watching childhood cancer youtube videos had to be stopped (for my own health), but I'm glad I came across this one because it just goes to show you how many people are watching their children fight for their lives like this. "I wanna walk!"  I spent a lot of time stretching Ty's legs yesterday.  At one point I had him wiggling his toes and trying to push on my hands.  Despite his severe weakness, there is some very slight movement and that keeps me hopeful for improvement.  I was cheering him on and at one point I said something about walking again someday to encourage him to keep trying.  I immediately wanted to ta

I've been gone for days, so I have a lot to share!  Bur first, a couple of favors to ask. Please go to the Gap Casting Call, search for "SuperTy" and "like" him on Facebook.  Imagine how much childhood cancer awareness we could spread if he was chosen!! The winners will be announced on Monday, so we only have a couple of days left.  CLICK HERE TO "LIKE" TY Also, one of Ty's beautiful nurses will be running her first marathon for Fred's Team this year.  This is such a huge undertaking.  As you may recall, Lou and his sister Debi raised around $30,000 for the cause when they ran last year.  It is an amazing foundation and the funds raised go specifically to support research for rare cancers (consisting of mostly pediatric cancers).   She needs to raise a minimum of $6,000 and I know you can help her do it!  Even if it's just $5, it would be so appreciated :)  Slowly but surely, she is getting there! CLICK HERE TO SEE HER PAGE I'll

This morning, Ty had tubes put in his ears.  He had this procedure done without anesthesia.  He's FOUR years old!  What a brave boy, but you all knew that.  It went so well.  Better than I ever could have imagined.  The ENT that agreed to do it told us flat-out that he has never performed the procedure on a child without anesthesia before, but that he was willing to do it if we wanted him to.  As you know, we are eager to begin hyperbaric oxygen therapy and didn't want to delay any further waiting for surgery w/anesthesia in a hospital setting.  The tubes are necessary because the chamber is under very high pressure and Ty is too young to pop his ears on command.  Now that this is over with, I will go to Phelps for his orientation tomorrow, and he begins on Thursday. Last night I didn't sleep well at all.  We had to be up and on the road very early for the appointment with the ENT, I had a lot on my mind and I was so afraid that the appointment wouldn't go well.  Th

Ty's Great Granny passed away today.  Of course I'm sad, but I'm also so grateful that she is at peace and that her passing was simple and painless with my mom holding her hand.  Granny turned 92 on April 4th, but she has been sick for two years so we have wanted this for her for some time.  I asked Ty if he remembers Great Granny and he said yes. Then I told him that she's sending him tons of extra kisses tonight (she's famous for wrapping her soft, skinny hands around your face and giving a series of loving kisses on each cheek).  Ty said "I don't want to talk 'bout that!" His response was a little odd because I certainly didn't say anything about her passing away (and I don't plan to), yet I sensed he was a little sad. After she heard the news, Colleen also texted me that she can feel grandma's kisses on her face and that made me so happy :) When I get home this weekend I am going straight to the room where we have Granny's o

We all still need some time to adjust to our new digs.  While this is a beautiful, clean, wonderful environment for rehabilitation, we have to learn our way around if we are going to live here for a while.  We spent so much time in hospitals that we know it won't be comfortable no matter what, but it's nice to know where the linens are, the vending machines, the water machines, the coffee - Oh GOD, the coffee here is beyond terrible.  We also learned that we are not allowed to sleep in the bed with Ty.  I had to slip rainbow bear into his snuggling arms and crawl out this evening which made me a little sad but also a little excited to get online and read a book before I take an Ambien to fall asleep myself.  Just a quick side note on the Ambien - don't worry, it's not habitual for me... it's just impossible to sleep in the hospital sometimes with the beeping and the non-stop interruptions coupled with all of the non-stop noise in my head.  So, every once in a w

Ty's fighting spirit, while it can be awe inspiring, also poses a lot of challenges for Lou and I.  Boy was he fighting hard today.  He was SO reluctant about going to the hospital.  He kept saying how happy he was to be home.  Broke my heart.  It started a couple of days ago, actually, when he called for me from across the room.  "Mama?"  "Yes, Baby?"  "I happy to be home."  I winced every time he said it because he wasn't aware of how short lived it would be.  Ty yelled and asked us to turn the car around for the entire 45-minute drive down.  He cried and carried on something awful that we almost doubted whether or not we were doing the right thing. On the plus side, clearly his voice is getting stronger.  Just two weeks ago he couldn't speak more than a whisper. Today was a crazy, stressful, hectic day consumed with paperwork, introductions, reviewing Ty's medical history and settling into our new home away from home.  I left Lou to

It is soo late, and today has been a long day preparing for tomorrow, so I am just writing a very quick update until I can properly upload Easter pictures and share what's on my mind. Ty is awesome.  We have been very busy, but most importantly, very happy at home.  Easter was nothing short of magical.  He is feeling better every day and showing some potential for physical recovery.  Today, for example, he was able to hold his head up better than ever, and he accidentally pulled his hand up to his face.  It was very exciting for him and he bragged about it quite a bit.  "I'm so happy to be home," he says often, which makes me so sad because tomorrow we will be checking him into the Blythesdale Rehabilitation facility.  He will be okay, though.  He always adjusts well (knock on wood).  We met with the hyperbaric oxygen specialists at Phelps Medical Center today (located just a few miles from Blythesdale) and it looks like they will accept Ty as a patient.  I will

What a blessing this has been.  Needless to say, Lou and I (and Ty) are absolutely thrilled to be out of the hospital in time for the holiday and able to celebrate with Gavin and Ty in our own home.  It feels so good to be back despite knowing that our time here is limited. However, we are also utterly exhausted.  We arrived home late on Thursday night, only to hit the road and head back to the hospital first thing in the morning for Ty's Avastin infusion.  The drug company doesn't allow for that medication to be administered while a person is inpatient and Ty was overdue for this life-saving medication due to his extended stay at the hospital.  We were there all...day...long yesterday.  Didn't get home until after dark.  On top of how tired we were from all of the traveling and the simple exhaustion from carrying Ty around differently given his new handicaps, we also have to be up to administer pain medication every four hours which means a very broken night's sleep.

News that had me almost in tears this morning has resulted in a serendipitous surprise.   Right now Lou, Ty and I are in the car heading home for the weekend.   After a month in and out of the hospital with no end in sight, it turns out that we will be spending Easter together as a family after all!   We are all a tiny bit scared to be going home under such difficult circumstances for Ty, and a whole lot happy at the same time.   Every once in a while Ty says to me that he’s not ready to go home because his head hurts too much, but for every time he says something like that there are three or four other statements about Gavin and home that overpower his fears (and ours).       At first it looked like we would be stuck at the hospital until a bed became available at the Blythedale rehab facility – which all of a sudden meant no sooner than Tuesday of next week (the status on some patients expecting discharge today had changed as of this morning).   I was climbing the walls at the