We had an appointment with Ty's oncology team before leaving for Long Beach on Friday, and it went fine. While it wasn't the most positive conversation as far as their feelings for treatment success in the long term (nothing new to us), we remain happy and hopeful because Ty is doing amazing and there's just no reason to believe that these wonderful days with our little fighter won't continue.
His eyes have gotten so much stronger, and that is a huge relief! I would guess he is about 90% back to normal. I would post a picture but Blogger is not functioning properly tonight (argh! - happens all the time) so I will share some tomorrow.
I mentioned that Ty had a few episodes of nausea recently, which I was trying to ignore. I also noticed him opening his mouth in a funny way. Both of these things used to happen often when he had significant tumor burden on his brainstem (his original tumor). Of course, seeing this made me physically sick with worry, everything was hurting, but I was able to block it out of my mind as much as possible. On Friday, the doctor said that the new radiation to the Cerebellum is most likely causing some reactive swelling at the brainstem site because that area had undergone radiation just recently. WHEW! That makes sense, then, why some of his old symptoms would be showing up. Luckily it hasn't been too hard on Ty, and he is really feeling great so far.
So, I also mentioned we will be spending time at our friends house in Long Beach for the week... I really didn't know how it would go with Ty, but so far he has been LOVING IT!! Already there have been so many beautiful moments; like when he put his feet in the sand again, or when he stopped in to say hello to his "friends" at our old diner. He has been willing to go for long walks in the stroller which is something he never does at home. There's just something in the salty air here that has been magical. At the same time, I have been crying constantly. I have so many flashbacks of my curly haired toddler running beside me on this same boardwalk, climbing the slide at the park right here on Magnolia street, walking hand in hand with me down our old block while I pushed his little brother, climbing ahead of me up the huge staircase at his preschool and chasing the ocean waves as they roll across the sand on a beautiful day. I see him everywhere. My baby Ty, perfectly healthy and glowing. I haven't been able to picture that little boy in a long time, and now it's like he is following me wherever I go. But this crying is good for me. It doesn't hurt too much. It just helps to remind me of how beautiful and strong and amazing he is and how far he's come.
This week I have so many things I want to do! I want to bring Ty to visit his old school (Miss Beryl!!) and to see his Sissy and Colleen (of course). I will spend time at my Mom's house and visit with my friends. We have radiation every morning, but since the drive time should be cut in half I think we will still be able to enjoy the majority of the days here.
Already we had the greatest "Welcome Back" we could have asked for. Our friends and neighbors had a delicious barbeque on Friday night and Ty was very amicable. He sat on the couch and watched his shows, being waited on hand and foot by all of our friends. I didn't know if he would be sad seeing his friends running around and playing without him after all of these months, but he seemed okay with it. Of course the kids wanted to see him and play with him, but when you're three and four it's impossible to understand why Ty is limited to the couch and why he acts so shy when they try to interact. Ty had one small episode of inconsolable crying so Lou took him outside. They disappeared for a little while and when they got back Ty said, "Mommy, I had so much fun!" Turns out Lou had walked him down to the beach and Ty put his feet in the sand for the first time since October 3rd. Lou told me it crushed his heart to see Ty so disabled (hardly able to really stand on the sand) but it warmed his heart at the same time to see him smiling so wide over being back at the beach. He always loved the beach and spent the majority of his life with sand between his toes before all of this. I should also mention that Gavin had the best time of all. He was running around outside for hours on end, sweaty and filthy, jumping in the bouncy house like a madman. He has never been in a bouncy house before and it was like he was introduced to a whole new world of fun beyond his wildest dreams. He deserves that so much. Poor guy is often stuck inside with me and Ty and doesn't otherwise get to interact much with other kids. Lou and I also deserved a few drinks in hand that night. Thanks so much to everyone for a great time and for helping us to unwind and feel normal again. Hello vacation :)
We continue to go to the supermarket every day, and I think Ty gets confused about where we are or how far away from home we are because today he wanted to stop by to see the "ladies at the bank" who we always see when we go to the supermarket in Patterson. Cute. Thank God we stocked up on a variety of fruits and snacks for Ty because he has been eating more than I have seen him eat in a year. It's so exciting! Bowls upon bowls of noodles, fruit and various snacks. He hasn't been eating the large quantities of salty meat we're used to, but I've stopped trying to figure him out when it comes to that stuff a while ago. I will never be able to guess what he's going to want to eat from one day to another, so I just make sure I have a very large variety of options. You should see the size of Ty's "snack bag" that comes everywhere with us. It might as well be a piece of luggage.
Last night my mom slept over which allowed Lou and I to get out with a bunch of other friends from all over Long Island and Brooklyn. Thanks so much to everyone who came out. I wasn't able to hang in there too late because I was so exhausted, but just the fact that I met up with about a dozen people at a bar to stand around and laugh with eachother was pretty wonderful. Thanks, Mom. We needed that.
Today was by far the best day for Ty. Lou and I locked eyes so many times just to give each other a teary-eyed smile because he is getting so strong and because he was so happy all day today. One of my very best friends, Keri, came over with her family and spent the day. We went to the beach and I am happy to report that Gavin LOVES the ocean waves as much as Ty did. Ty allowed me to put my feet in the water while holding him and he even fell asleep for a few minutes on my shoulder while I swayed back and forth. We did that all the time when he was a baby and needed a nap on beach days. Lou or I would take him down to the water and let the sound of the waves soothe him to sleep. I guess it still works :) Ty is allowing himself to seperate from me a bit more, too. He let Keri hold him (this is HUGE!!!) and he let me eat dinner outside on the porch with everyone while he was inside with Amela (our babysitter who we love more than anything) and there were moments where he was truly playing with Gavin and his friends. For example, at one point we were sitting at the kiddie pool with a water table next to us. Ty was on my lap while the others were in and out of the pool and back and forth from the water table. Ty asked me to hand him a number of squirty toys and other stuff and he reached over to the water table and started playing with a big smile. He is finally turning around a bit and allowing himself to be the fun, independent 3-year old boy that he wants to be. Sure, we are only capturing glimpses of this here and there, but it's amazing just the same.
The biggest news I have to report is.... drumroll.... Ty is officially back on the potty!! I finally felt like he was strong enough to hold himself up on the potty seat, so over the past couple of weeks I started talking to him about going on the potty instead of the "pee-pee can" and in the diaper. He was so reluctant and fought me tooth and nail, but today was a turnaround day on so many levels and he even pooped on the potty twice. That's something he wasn't even doing well before he got sick! When he is a little stronger I am going to break out all of his old superhero undies. I am just so proud of him I want to shout it from the rooftops, "Ty pooped on the potty!!!!" He's my big boy and I love him beyond words.
I think radiation is going to take a toll by late next week, but it's okay. He gets the weekends off so he can bounce back a bit and I think that's exactly what happened this weeked. He had such a great weekend I will hold onto these past few days forever. I wish I had a video camera attached to him at all times so I could have captured every beautiful second of this past weekend. I am just so happy.
Lou took off for the entire week, and tomorrow morning he is going to try taking Ty to his radiation appointment without me. I am SO EXCITED to have the morning off, I have already thought of a million things I want to do. I just hope it goes well in the morning and Ty is willing to allow this. Please, for my mental health. There is an empty beach chair sitting in the quiet early morning sun that is calling my name. With love to you all from Ty and The Campbell Family.