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. 

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


  1. Sitting here and watching the Yankee game and thinking about Ty and family. Keeping all of you in my prayers.


  2. Cindy- this is your voice of reason... Lara who is ten days older Gavin has been waking two to three times a night for the last 3 weeks either screaming or wanting to chat! Has been impossible to get to fall asleep- tossing and turning for over an hour and waking up at least 45 minutes earlier. They need to be temporary roommates till this passes!