Friday, July 29, 2011

Fordham Football!

Wow, Ty and Gavin both fell sound asleep tonight at 7:30 (!), and I came out of Ty's room to find that Old School just started on HBO.  Yay!!  I can't stop laughing, it's been too long since I watched this movie.  I am going to have to keep this short. 

Today, coach Tom Massella at Fordham University introduced Ty to the football team. Ty was a little shy but he still flashed the guys a bunch of his trademark smiles, he was proud to wear the Fordham hat they gave him, and he was excited about getting jerseys and a signed football from John Skelton who is now a rookie quarterback for the NFL Cardinals.

Lou and I didn’t even realize that Vince Lombardi was a graduate of Fordham and we took some pictures with Ty in front of Lombardi’s locker! So cute. I cut myself out of this picture because I was not looking cute, but Ty is :)



We spent some time with the guys in the locker room after their workout and Ty personally handed out "SuperTy" bracelets to everyone. We are invited to attend practice and any of the games and we are definitely planning on going to the game when they play West Point because it’s closer to home for us.  We will have an official "adoption" ceremony with the team and Friends of Jaclyn soon, and I look forward to sharing those photos with you.  Lou and I are really excited about this. Ty is going to feel so special being part of all this. We told Ty how the football players "beat up" the other teams just like he "beats up cancer" and he thought that was pretty cool.

Tomorrow we are off to the lake! The weather report doesn’t look that great, but I’m looking forward to putting my feet up a bit regardless. And no more 5:30AM departures for radiation treatment at the hospital! That’s the most exciting part.

We saw Ty’s team today, they can’t get over how good he looks. We won’t be starting the Temodar (chemo) on Monday because Ty’s white blood cell counts were dropping today and they need to be monitored upon our return from vacation, but hopefully Tuesday or Wednesday we can get him back on that medication. We also discussed the possibility of putting Ty back on the high dose chemo that he was given in October and November - it worked very well against the tumor - but he just isn’t a candidate yet because his bone marrow is too weak (in fact, because his white blood cell count was low today we have to give Ty GCSF injections for the next two days).  Any aggressive chemotherapy regimens just wouldn't be safe right now, I guess.  We just want to do whatever it takes so we also have a friend looking into an exciting potential alternative on our behalf (thank you Chris!).  With radiation behind us, it's hard not knowing what the best next steps are, but we are figuring it out.  For now, the best next steps are to enjoy our vacation!  Thanks to all of you for always thinking of us.

Xoxo.

Last treatment today!

We are heading into the city for Ty’s last radiation treatment. Hopefully this will be the last he ever needs. Overall, Ty has been sleeping much better at night, but he still wakes up with anxiety about going to the hospital. In the middle of the night he often gets up and says, "I’m weddy to go!" It’s sweet and exhausting. He hasn’t been fighting me about going in this week because I think he just wants to get it over with.

Lou and I have been so emotional over the past week or so. We trade tears at night because we are just so scared for what’s next. As much as we want to enjoy every minute where Ty is feeling good, it’s been harder than I expected because seeing him like this only makes us hope and pray and ache for his continued improvement even more. I am so worried because his speech is starting to decline, but I have to remind myself that he has trauma from all of this radiation that it’s probably wreaking havoc inside.

The reality is that we were given a terminal prognosis recently and that fact is always, always in the back of our minds. But, so is the fact that there are always exceptions – ALWAYS – Ty has beaten the odds already and he will continue to do so. Besides, all things considered, Ty is one amazing kid. I have so much faith in him, and in God. And so does everyone that meets him.  I can see him as a handsome young man who comes over for dinner at his parent’s house on the weekends. Please, please, please let this be true.

A few weeks ago, I allowed myself to plan for our vacation at the lake. Now we will be leaving for that trip this weekend and Ty is so excited about it! I am so happy for him, and I can’t wait to enjoy an entire week of peace and quiet with family. Yesterday, I looked ahead even further and imagined taking the boys for a day trip to see the Fall foliage at Mohonk Mountain House in a few months. Two scenarios came to mind. One where Ty is on his feet, walking in the trails with some assistance and bending down to pick up leaves and sticks. Another where he is viewing the scenery from his stroller, sick, covered in blankets. I hate how that happens. I wish I had a filter in my brain that would only allow the positive thoughts and visions.

I was crying for over a half hour on my way home from the hospital the other day while Ty was sleeping. It was totally okay, I needed a good cry and it helped me to feel better. Then, yesterday I got pulled over on my way home.  I don’t usually drive very fast but I was caught up in my thoughts, it was a beautiful day and a wide open road so I guess I didn’t realize I was speeding.  I am so grateful to the trooper for being so sympathetic to our situation and letting me go with only his kind words ("Please accept my sympathy for your situation, and try to drive safely during all of these back and forth trips. My best wishes for your son to get better").  Again, I cried after I pulled away because I just needed an immediate release for the stress that incident caused, and when I did that Ty started crying too! He cried even louder than me, and it was so sincere. It was the sweetest thing you can imagine. I immediately stopped and I told him that I was only crying because I was so excited that we were on our way home and that everything was okay. He nodded through his tears and told me that he was crying because he was excited, too. Awww, we are just so connected, me and my Ty.

On our way home today, we are taking Ty to meet the football team and coaches at Fordham University! There is a wonderful organization called Friends of Jaclyn that connects children like Ty with sports teams to provide a support network that makes the kids feel so special. Fordham football is adopting Ty and Gavin. They will get jerseys, a football, and anytime access to the games. I think this is something that is going to get Ty excited, and something that Lou and I are already excited about. I look forward to future posts about Ty’s experiences with the team :)

Thank you for following Ty and for all of your love and prayers. Today is a happy day.

Tuesday, July 26, 2011

How do I love you?

This is the title of one of the books I've been reading to Ty ever since he was a tiny baby.  Among so many others.  The answer I always tell Ty is "I love you infinity."  You already know that he tells us how he loves us "big much" ever since he was two years old.  He made that up himself and it's totally adorable.  And you know I always tell him I love him "more" and if he answers back "no, I love you more!" I tell him I love him "the MOST, case closed, no backsies" (has everyone used those terms as kids or is that just a Long Island thing?).  But, if the conversation starts where he asks me how much I love him, I tell him infinity.  I explain that if I were to stretch out my arms to show him how much, they would stretch on and on and on into forever and they would never ever end.  That's how much.  I love Ty and Gavin with every tiny, teeny, itsy bitsy microscopic piece of my existence. 

So, tonight I laid in bed with Ty to put him to sleep and we had shared such a sweet prayer.  He usually prays at night with Lou and they have a whole routine, but tonight I was alone with him so I made pretend I didn't know how to do it.  He thought that was so funny so he walked me through my prayers and told me what to say.  At the end he says "tank you, God, por no more cancer, good night Uncle Jimmy, Amen."  It was so sweet in his adorable little voice.  I know God was listening and smiling down on that perfect little boy tonight. 


Three more days of radiation.  Ty has been fighting me in the morning each day this week.  I think he's just sick and tired of being there.  But otherwise we try to have as much unaltered fun during the day as possible.  Today was spent with the kiddie pool set up for Gavin (who ran around naked for hours).  Ty sat on my lap and put his feet in the pool several times, and he enjoyed watching his brother running around in and out of the water. We were in and out of the house all day, it was just the three of us, and we had a wonderful day. 

I am trying so hard to enjoy these happy days without worrying too much over when the bottom is going to fall out.  That lingering thought never goes far, but I manage to keep it tucked away in a place where it remains an itch that can't be scratched but no one knows it's there. 

Here is a funny picture my other baby boy who I love to infinity and beyond ;)  Yes, he's sitting in the washing machine. 


XOXO, with love from Ty and the Campbell's
  

Monday, July 25, 2011

Continued improvement

I didn't want the news of Ty's recent visit to his old preschool and to Sissy's house to get lost in the last post, so I am sharing now.  Ty started going to our beloved Sissy's house when he was 18 months old, and we couldn't have asked for a better caregiver.  Then, when he was two, we started sending him to Kids by the Sea twice a week for a three-hour session in the morning before spending the rest of the day at Sissy's again.  I dropped him off before work and picked him up over my lunch break. It was perfect.  Ty loves Sissy like family, we all do, and he learned so much at "school."  He still sings the songs and talks about his teachers there. 

Lou and I were afraid that Ty wouldn't be very warm when we visited, but it was just the opposite.  He was whining and fearful when we first started climbing up the familiar stairway, but once he saw Miss Beryl, Miss Shelly and Miss Danielle his face lit up.  He showed me the storage benches that are filled with all of the toys he used to play with.  He even had me carry him inside the small plastic house where he used to spend so much time playing.  Gavin was having fun, too, and I only wish I was able to send him to preschool too because he is ready!  Some day soon.  It was a little sad to hear that most of his classmates have moved on and will be starting pre-K this year (Ty would have been getting on the school bus himself this September), but it also helps me to look forward to the day that Ty can do the same and brag about how far he's come.  Lou had a hard time holding back the tears when we were there... more so than I did... and I totally understand why.  Life was so great when Ty was a normal, happy kid who loved to jump up and down the steps on his way to school.  We didn't appreciate what we had and now we feel like it was ripped away from us by a force so evil and disgusting.  We can't wait for the day that Ty is back in a program where he can make new friends and have FUN for a change!

After school we were off to spend some time with Sissy, and it was like we never left.  Her house is so warm and welcoming and Gavin made a beeline for his favorite chair as soon as we arrived.  It's amazing how much they remember!  Ty was still talking about it just this morning on our way home from the hospital.  Ty was still very groggy from his anesthesia and he asked me if we were on our way to Sissy's house when we got in the car :)  Thank you, Sissy and Colleen, for such a nice visit.  You are so loved.  We can't wait to see you again soon.

I am in the process of having Ty evaluated by the special education department here in Pawling so he can receive speech, occupational therapy and physical therapy through the school.  Today he had his speech and PT evaluations and I can't tell you enough how proud I am of my little man.  He was so charming and so sweet.  He participated without complaining one bit and I was totally shocked.  He is usually so shy and so nervous when anyone comes to visit who might be a doctor or nurse of any kind.  These women were so great at engaging him in playful activities to help evaluate his disabilities.  On the PT side, there isn't much beyond the obvious that we discussed - meaning he clearly needs regular physical therapy in order to get him sitting up independently and back on his feet.  Our main goal is to get him stable and mobile which will enable him to engage in more active play and household activities.  God how I want to get him off that couch!!!! On the speech side, I was told that his receptive language is good (meaning he understands everything he is being told), that his grammar is slightly behind but nothing to worry about, but that his articulation is very poor.  Again, not a huge surprise there knowing how much trouble he has mobilizing his tongue ever since his very first surgery (his cranial nerves were very stretched at the time).  It will just take time and therapy to regain the strength and coordination that will get him back to normal.  But I was happy to hear that aside from his pronunciation he is otherwise doing well.  In fact, I was surprised by his vocabulary.  I had no idea he knew what a telescope or a calculator is! 

Three weeks and I only had to give Ty one dose of Tylenol for a headache.  Not morphine.  It's truly unbelievable.  Three weeks and he only had two days of nausea and vomiting.  This is after 11 months of non-stop headaches, nausea, vomiting and worse.  Non-stop.  I am trying to record every single moment in my brain so I can remember and appreciate these days always.  I can't pray hard enough for God to allow his improvement to continue indefinitely.  SuperTy is one amazing little fighter and he can do this.  Right now his cancer is microscopic.  May it never re-appear in tumor form and may all the remaining cancer cells die and rot in h*ll. 

XOXO and good night. 

Sunday, July 24, 2011

A perfect end to a perfect vacation

Our vacation is over, but the Campbell's are still smiling.  I consider this past week a "practice" vacation of sorts because it was so spontanious, we didn't know how Ty would react, and because we still traveled into the city every morning for radiation.  Our time in Long Beach this past week was great, Ty adapted to being away from home so well, and we are looking forward to celebrating his final radiation trip with yet another vacation.  Next weekend we will be heading upstate to spend a week at Schroon Lake with my parents and my sister's family.  If there is any summer when a family deserves to take two vacations, it's this one.  Ty was diagnosed just eight days after we returned from our annual vacation at the lake last summer.  There were so many times that we doubted whether or not Ty would make it up to there again, and now it is right around the corner and Ty is doing just great.  We told him about going up there the other day and he said "I'm gonna take my fishing pole!"  Last year we bought him one and I couldn't believe he remembered. 

I haven't been able to post for a few days, so I want to share a quick medical update and then some fun photos from the past week.  Ty will be back tomorrow to kick off his last week of radiation treatment to the Cerebellum.  We expect the hair on the back of his head to fall out any day now, which totally stinks because he doesn't look sick anymore to the average stranger, but he has taken to wearing summer baseball caps so I don't think it will bother him too much. See?


After we complete the next five radiation treatments, we will go off to the lake for one whole week free of hospital visits and medication before we return for another round of Avastin, the chemotherapy that Ty is currently on.  At that time we will also have some very serious discussions around next steps.  Lou and I want to try a more aggressive treatment regimen while his disease is microscopic, but Ty's doctors probably won't want to move forward with anything too strong given his weak bone marrow.  It's such a tough discussion to make because Ty is doing so well and we don't want to risk another serious infection or worse... but at the same time Lou and I feel like now is the time to go for it - even if it means going against some of his doctor's ideas.  We'll see.  We haven't had these discussions yet and there are so many factors that will guide our next steps, but right now that is where our minds are at.


The last few days have continued to be some of the happiest days we have had in almost a year.  On Thursday we went down to the beach again, and Ty was really enjoying himself down at the ocean.  It was so hot so it didn't last long, but I will never forget this face down by the water (or those perpetual blue lollipop lips)!  Lou and I snuck out after bedtime that night to meet up with our friends for a twilight ride on their boat and a delicious dinner at a restaurant on the water.  Jeanine and Mike have done SO much for us and especially for Ty, I'm so glad we got to catch up.  Thanks guys, for such a nice night :)


Friday we packed up and went to my Mom's house for the day.  Grandma and Pop-Pop spent the day bending over backwards to feed Ty whatever he craved, and my mom also prepared a delicious dinner for us.  My brother and niece, Ashley, also joined us for dinner which was such a nice surprise, and I got to see my beautiful young cousin Juliette who was in town from Puerto Rico visiting with her Grandma (my Aunt who lives around the block).  Juliette, thank you for the amazing "flip flop" cookies.  The cookies were as delicious as they were meaningful.  Her mom, Rosalyn, often posts to the blog about how soon our lives will turn around and we will be wearing flip flops in the sand instead of the awful, ugly shoes we are stuck with right now... and I believe her!  I can't wait :) 

We spent the rest of the weekend back home in Pawling.  Ty was happy to be back on his favorite couch and we were all happy to have a couple more days to unwind at home.  We had a birthday party Saturday afternoon (happy birthday to Johnny and our Godson Luke!) and Ty was such a trooper.  It was hot outside and he stayed for a pretty long time while Gavin had a great time on the playground and swimming in the lake.  I mentioned how important it is that Ty wears a hat to keep his head from sun exposure, so I had Gavin in a cute baseball cap, too.  Gavin prefers to wear his sideways :)  Ty fell fast asleep on the way home.



We closed out the week with an AMAZING day today.  The Iron Riders held their annual fund raiser today, and this year they selected to honor Ty!  This is a large group of bikers who get together in support of great causes.  What a nice group of people.  They followed the ride with a delicious barbeque event in the park, and I felt so much love from everyone it was really wonderful.  Here is Lou and his Dad on their bikes earlier today, and a nice picture of the whole family at the event.  Thank you so much to everyone who attended, and especially to all of those who helped to plan and who volunteered at the event.  So much planning went into today, and all of that hard work resulted in a very fun day for everyone.  Ty, too, of course.  Thanks again, Iron Riders! :)  See you next year!  With all of our love, the Campbell Family.


Wednesday, July 20, 2011

A long day at the hospital today

We had a long day today.  We left at 5:45AM for the hospital so Ty could be on time for his first radiation treatment at 7AM.  Then we went upstairs to see his team and he was put in a room in the day hospital so he could receive an infusion of the new chemotherapy I mentioned previously (Avastin). 

Ty tolerated that very well, but he was very irritable just being in the hospital because he wasn't allowed to eat or drink anything besides water or apple juice - he had a followup radiation treatment scheduled later in the day which required additional anesthesia so he had to remain "NPO".  So, we had a very cranky boy who wanted to go home and couldn't understand what was "taking so looonnng!?!?"  Luckily, there was a talent show taking place in the Day Hospital today and that kept us entertained for a while.  I enjoyed it so much and I'll never forget it.

Some of the acts included a six-year old boy who played jingle bells on the guitar, a nine year old "cowgirl baker" who was dressed up and shared a quick how-to on baking cookies, a four-year old boy who sang Justin Beiber's "Baby, Oh," and a five-year old boy who did the Salsa with his older sister.  I was also so impressed with Dr. Cheung, an older attending who got up in front of all the kids to sing "You Got a Friend in Me!" from Toy Story.  It was so endearing.  I love him so much more now that I see what a softie he is.  He is not on the neuro-oncology team, but he is often the attending on the floor when Ty is admitted overnight on the other side.  Ty signed up to tell a couple of knock-knock jokes, but we got called away for an appointment with his team and by the time we were done he didn't want to go back in the room where the show was taking place.  I'm so sad we missed that opportunity because they were taking pictures and videos of all the performances... how cute would that have been?  Of course, I would have shared it with you all.  In fact, I wish I was allowed to take my own pictures and videos and post of some of the other acts because I know you would have been as touched as I was by these amazing kids. 

It's just so strange, this world we have been thrown into.  Lou missed the show and was asking about the boy who did the salsa dance and I described him as the one who was getting sick in the hospital coffee shop last week and I helped his mom clean up.  This is our new normal, and it's just so wrong.  Just seeing how many kids were packed into the toy room today for the talent show is a big reminder of how many families are in this same warped world with us.  Some day, it will be different.  New treatments need to be found.  Period.   

Ty also saw his radiation doctor today, and she said he's doing great.  She said the throwing up last week is definitely caused by the swelling from the radiation, but she thinks he has already experienced the worst of the side effects.  Especially now that he has the Avastin on board.  I hope she's right!

Last, I want to share a small milestone for Ty.  He helped to strap himself into his carseat for the first time, ever.  He was strong enough to put the top clip together, and helped me to push in the other ends of the harness at the bottom.  I was so proud of him!  I also think he is officially potty-trained again.  He hasn't had a dirty diaper in three days, and he acts as if going on the potty is his new norm.  Fingers crossed for my big boy!!!!  I just can't believe it!

Of course, I forgot to bring the attachment for my camera so I can't upload any pictures unless they are from my phone.  As soon as we get home I will post some of the great pix we took at the beach. 

Goodnight and love to all of you.  Thank you for your support. 

Tuesday, July 19, 2011

Date night!

Need I even say more!  We got out for some alone time tonight around bedtime for the boys and I still can't even believe it happened.  Lou is already asleep on the couch (food and beer overload, I think) and I will be keeping it short.  It's already late and we need to leave by 5:30AM for the hospital tomorrow.  \

Tomorrow will be a long day because Ty is getting double radiation (one treatment at 7:30AM followed by another at 1:00PM) and a chemotherapy infustion.  This chemo sholuldn't make him too sick.  It is just to keep swelling and potential tumor growth under control until Ty is in better shape to tolerate some stronger treatments.  He should still feel okay for the rest of the week so we can continue to enjoy this time at the beach. We only have a couple more days left so I want to squeeze everything I can out of it. 

The highlights of the day included the following:
  • Ty put his feet in the water down at the ocean.  He was so scared at first, but once he got his feet wet that fear was overcome by genuine laughter.  So happy!
  • Ty continued going to the bathroom on the potty throughout the day.  He gets upset, but he's doing it!
  • During our second trip to the supermarket today, I bumped into a childhood friend (Jenn) who grew up on the same block as me when I was a kid.  We have been in touch ever since Ty got sick, but this was the first time I saw her since his diagnosis and we shared a great hug and a quick cry.
  • We kicked back with our old neighbors Regina and Patrick for a couple of beers and great conversation without the kids!
  • After visiting with friends, Lou and I rode bikes on the boardwalk and stopped by at the hotel, the Allegria, for some tuna sliders and other delicious bar food.  There was some great people watching to be had, and we fully enjoyed it. 
Thanks to everyone for all of your encouraging posts to the blog and to Ty's facebook.  Yes, we're having a great time and I hate that I am haunted in the back of my mind with a question about how long this will last.  Forever, right?  Oh God, please let that be so.  Big hugs and kissed to all of you.  Love, Ty and the rest of the Campbell clan. 

Pictures!

The vacation fun continues!  First, Ty went to the hospital with just Lou this morning, and I slept late!  It was incredible.  I had the morning to myself because Amela was watching Gavin.  I went down to the beach late, and Lou met me there after he got home from radiation for a swim in the ocean together.  This was the first time we EVER left Ty alone with Gavin and Amela babysitting, and it went great.  You know Ty is feeling well if he gives me any space at all, but this kind of space is actually weird for me because it is so extreme.  I didn't realize how badly I needed some real time to myself and some time alone with Lou until it actually happened.  We had such a nice morning and I hope this continues.  It will.

I cried so much before Lou got to the beach because I was alone for the first time in ages and I saw a number of toddlers playing in the sand that made me smile, and then cry.  I can't help it because I can't stop thinking about how that was TY!  Not too long ago, that was MY BABY playing in the water, shoveling the sand.... it's hard.  But it's also so good for me.  To be alone and to allow myself to be sad over what we lost.  It's okay and it's healthy and it helps me to feel better afterward.  If I wasn't allowed this luxury of solitude, I'm afraid the buildup would eventually become unbearable, so this time away from home has been very therapeutic for me.  For all of us, I think.  I mean, just look at how Ty is doing?!!?!!  He has been so happy over the past few days.  He's getting better and better and will continue to do so!!

I mentioned how much fun we had at my friends house on Friday when they set up a bouncy house for the kids.  Here are a few pictures now that Blogger is working... 
Ty is enjoying a gummy bear or something so he couldn't be bothered with smiling, but he's happy
That's Gavin, falling down the slide like a maniac
There's no denying that this kid is having fun..


And here's Ty.  See how much better his eyes are doing!  It is almost a non-issue by now.
The fun continued today, we enjoyed sushi and beer with friends, and Ty was hamming it up for everyone instead of being his usual shy self.  He is feeling good!  We are having a great time.  I expect the radiation to take its toll later this week, but for now he is still showing no signs of pain or discomfort.  We just have to be very careful about sun exposure for Ty, specifically the areas that are being radiated, so he wears one of his lighter winter hats because it is nice and snug and I can be sure those areas are covered. 

Although we are away from home, my sister-in-law has been checking in for us every day and I want to thank whoever sent a perishable package this week.  It was received and taken inside, no problem.  I just didn't want you to worry :)  Thank you so much!  It will be such a treat to come home to on Friday.  :)

XOXO love Ty and the Campbell's

Monday, July 18, 2011

Having a great time in the old neighborhood

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.

Thursday, July 14, 2011

Papa, we love you

The past two days I came home to find my father-in-law hard at work trying to fix a number of complicated things at the house.  This is not uncommon.  In fact, after we moved in, Lou's Dad has been here at the very least once a week helping us to get things in order and fix odds and ends around the house.  He even re-tiled our fireplace and our bathroom on his own and he did an amazing job.  He is a perfectionist and I think he can do just about anything, but I worry that he is working too hard!  I mean, he's up on ladders, in our crawl spaces, lifting heavy appliances, etc.  He is unbelievable :) 

I just want to extend our thanks to "Papa," because we would be lost without him.  His birthday was on July 3rd and we had a small party in his honor but it just wasn't enough to show him how much we love him.  This picture, however, is a pretty good depiction of just how much he means to Ty.  Ty is very selective about who he allows to lay in the bed with him.  That's big love right there.


I should also mention that when we lived in Long Beach, both Papa and Nana would drive almost two hours once a week to babysit Ty when he was little.  They have always been there for us, even before Ty got sick and now more than ever. 

Ty is doing so great, it's hard to believe he is neutropenic!  Neutropenic means that his white blood cell count is next to nothing.  The white blood cells are responsible for fighting bacteria and other illnesses so it is very important that we keep him inside and away from any germs as much as possible until those counts get better.  It also means we have to give him a shot in his leg every night, and he totally hates it.  At least while he is getting radiation I can have the nurse give it to him while he's under anesthesia every morning!  Then I only have to be the bad guy on weekends.  I don't expect this will last more than a few days, anyway.  

In order to improve the brutal commute into the city every day and to enjoy some of these beautiful summer days at the beach, we decided to leave for Long Island tomorrow and head toward Long Beach for a week-long stay at our friends' house.  We are really looking forward to spending time with all of our friends there who we miss so much, and getting Ty outdoors to enjoy some fun in the sun.  Of course, I will see my Mom and Dad, too, and Ty will be excited about that.  Even though we still have to be at the hospital every day, I think this will be a nice break for the Campbell's.  One that we desperately need.  Tomorrow Ty will have his bloodwork taken again so I'm hoping for some improvement.  We are scheduled to begin Avastin, his next course of chemo, on Wednesday and I don't want this to delay anything.  Love to you all... XOXO.

Wednesday, July 13, 2011

Huh??

In true Ty fashion, Ty's bloodwork from this morning has declared him as neutropenic.  It makes absolutely no sense since Ty's last dose of chemotherapy was adminstered well over 28 days ago, and the bloodwork was taken this morning before his first dose of radiation therapy.  The doctors have no good reason to explain why his red and white blood cell counts remained strong during the course of his last two chemotherapy cycles, yet now his counts have dropped dangerously low.  So weird. 

This happened before, when Ty was in the middle of his last radiation treatment.  Radiation rarely causes a person to become neutropenic, but for Ty it happened.  At the time, he had just finished fighting an infection and his doctor explained that the high levels of antibiotics that were adminstered had weakened his bone marrow and affected its ability to replenish his white blood cells in a timely manner. This time they don't even have an explanation.  He has been off antibiotics now for quite a while (and PLEASE let it stay that way).

It's totally okay, though.  As long as Ty doesn't run a fever or show any signs of an infection.  I have a feeling this won't last long, and it probably explains why he has been so tired/irratable (in between his totally adorable laughs and smiles throughout the day).  The bottom line is... Ty is happy, he feels good most of the time, and me and Lou are loving every minute of it.  Even at 5AM when I have to wake him up to get in the car.  He is a joy and he is improving with every day.  In fact, he continues to eat well and today he discovered that he likes Smartees!  He is definitely my child with his undeniable love of candy. 

Lou and I just love him so much.  He is laying in between us right now sleeping peacefully and Lou whispered... "I just can't imagine a world without him."  Neither can I.  I can't even go there. 

For those of you who aren't active on Facebook, I am sharing a link to a local story that was written about Ty before I go.  I think the reporter is a terrific writer and did a great job in sharing his story and depicting our day to day life.  Check it out  at http://patch.com/A-kjMs. Thanks so much to everyone who helped make the story happen.  (Erica, Ashley, Christina). 

Tuesday, July 12, 2011

Happy boys

Check out Ty.  He wants to get more involved in the blog :)



One thing I've certainly learned is that we can't plan ahead during this journey.  In fact, last month we received a folded card from our team at MSKCC that outlined Ty's chemotherapy schedule and clinic appointments from June through August.  Lou and I were so excited, we didn't even know they made calendar cards at the hospital because we never had a plan before.  So much for that.  Clearly, our plans changed when we rushed to urgent care and found that his tumors required additional surgery, radiation, etc.  Change of plans... as usual. 

That being said, Ty did not begin his radiation therapy today.  Not a big deal, it was only delayed one day.  We start tomorrow.  I will be waking up with the sun and riding back and forth into the city for the next three weeks.  This time the radiation team decided to use conventional treatment as opposed to the IMRT he got the last time.  It was explained to us that this decision was based on the size of the area in which they want to hit (the entire cerebellum rather than pinpointing a focal area) and the ability to prevent any radiation from hitting the brainstem area with this approach.  We put our trust in them completely, and pray this is Ty's best option. 

Ty will be starting a chemotherapy called Avastin during the course of radiation.  Avastin is not a drug that will kill the cancer, but it controls the integrity and growth of blood vessels, in particular the capillaries that a tumor needs to grow beyond a certain size.  It also helps to prevent swelling without having to put Ty back on steroids.  The hope here is that the Avastin will keep Ty comfortable during radiation and prevent any new tumor growth over the next few weeks until we can try something more aggressive.  Fingers and toes crossed, as always. 

Ty had a very good day today, but we had one terrible "fight".  I had to put him in his room to cry it out for a while today - he was simply misbehaving and not being nice - and he started screaming out, "Mommy!  I hate you!" for the first time, ever.  I thought I would have been horrified, but it really didn't bother me much.  I totally remember doing that to my mom, even at an early age, so I'm okay with it.  It's a little sad, but we both got over it quickly and had a lot of fun after that. 

Today, Ty ate more than I've seen him eat since December.  It was a non-stop food fest for one of the pickiest eaters on the planet.  I'm proud to say that he had steak, chicken, bacon, noodles, goldfish, pretzels, lollipops, pineapple, apple, yogurt and fruit snacks throughout the day.  Not too bad!  Of course, Gavin ate twice as much but he also weighs 33 pounds to Ty's 25 pounds.  He's a hungry boy :)  Here he is wearing an Iron Man Mask that Ty received as a gift in a very special care package a couple of months ago.  He's so cool, he wears it off to the side :)   



Last week at the hospital I saw something incredible.  There was a mom who was there by herself with all four of her children under seven years of age.  Three young boys and a baby girl who couldn't be more than 10 months old.  I am still in awe of her.  People always tell me what an amazing mom I am because I am doing all I can for Ty, but I'm nothing compared to her.  Lou comes to the hospital with me often, and we never bring Gavin along because it's just too difficult.  Here's a woman juggling all four of her young children, one of whom is undergoing chemotherapy, and doing it with patience and a smile.  Now that's amazing.   

Monday, July 11, 2011

What I wouldn't do

We had a pretty good day today, meaning Ty was feeling okay and he ate well.  He was really cranky and he abused me for the majority of the afternoon, but I think I kept it together pretty well.  It just breaks my heart that my typical day with my three-year old revolves around taking him out to the supermarket at his unwavering request only to have him whine the whole time, and carrying him around my house for what feels like hours on end.  My back is breaking.  Every time I put him down, he says he wants to "pick some-ting" to eat... which means I need to pick him up again and take him to the cabinet with the same options he looked at just minutes earlier.  It is similar to the hospital days where he had me reading him the cafeteria menu over and over and over again.  He says he's hungry, he wants to eat something, but he hates all of his options and yells at me if I make any suggestions. 

When Ty isn't feeling so hot, he cries and whines so much when he doesn't get his way.  Even if he does get his way, the tiniest thing can set him off.  It's so hard to navigate that line of parenting where it is fair to punish my poor baby who has already been through so much and clearly suffers a lot of emotional insecurity.  We have our fair share of time-outs where he goes in his room to cry it out until he can calm down and re-join us, but I am very selective as to when I will actually use it.  I have also mastered the "count to five" technique, so when Ty is leaning more toward spoiled rather than giving me a justified cry, he cowers down by the time I count down to three.  Sometimes two, but it works. 

I realized today that sometimes the kid just needs some Tylenol.  Geez, I get headaches every day and I don't even have cancer.  So, today when he was especially cranky I gave him some Tylenol even though he proceeded to kick and scream telling me me he doesn't need medicine.  You know what?  Within 15 minutes he was the laughing, smiling boy that we saw yesterday and it lasted for the rest of the day until bedtime. He became a joy to be around, and what a relief it was for all of us.  It made me feel bad for getting so stressed out over his bad behavior earlier in the day because I realize he has so much going on, physically.  In fact, we were even able to go out on a date around 3PM, which is one of my favorite things to do with him.  We stopped by the local pharmacy to pick up a prescription and he told our pharmacist that he wanted a steak!  I was so excited to get some hearty calories into him, I whisked us off to the nearest restaurant/tavern and he was so good the entire time.  Apple juice and filet mignon for our SuperTy.   

I hate that Ty still has days with pain and discomfort, but a little Tylenol is no big deal.  It isn't morphine, and that's amazing considering how far he's come.  He also threw up in the middle of the night last night.  Can't explain why, but I'm trying not to worry about it too much.  I think he just has a weak stomach and he felt kinda yucky.  This intermittent vomiting over the past few days is nothing compared to what we've seen in the past, so I am trying very hard not to let it worry me too much. 

Ty's first MRI was on August 11th, 2010.  One month from today will mark our year anniversary of fighting this disease.  I don't think any doctors reviewing his case thought we would come this far.  So, HA!  Please, God.  I pray it is all worth it.  I will do whatever it takes, just tell me what to do.   I'm sure you've seen the movie Braveheart. At the end, when Mel Gibson gets tortured with a devise that resembles a huge fishing hook? I swear to you that I would willingly get up on that table if it would cure Ty. I would - RIGHT NOW! Even though the physical pain would be unbearable, it would be over after a short period of time... The emotional pain I have been dealing with over the past 11 months has been far worse.  I am excited to begin his new course of treatment and I am just so hopeful that Ty will continue to beat the odds.  It has been a long and exhausting road, and I can't wait to tell you about the rainbow we find in the end.  Some day.  Hopefully soon.     

Goodnight all.  Thank you for your love and support.  XOXO from Ty. 

Sunday, July 10, 2011

Many updates!

I hate when I get overwhelmed because I fall behind in my posts and it is so important to me that I keep blogging about this incredible journey with all of its ups and downs.  Thanks to everyone for checking in after seeing the delay.  My only excuse is that the past four days have been totally hectic and filled with their fair share of such ups and downs.  Here we go...

Thursday:  Hospital day.  Ty did so well.  Both of the neuro teams (oncology and surgery) reassured us that his eyes have improved, that they show no signs of permanent damage and that we just need to be patient.  Thanks to all of you who recommended patching.  His doctors also felt we should give it a try to see if it would make it more comfortable for him for watching TV.  We picked one up on Friday, the same day that Ty received an adorable gift with the most perfect pirate themed "do-rags" in the mail.  Fortunately, Ty has gotten so much better in the last couple of days we haven't even needed to use it.  Check out how good he is looking in this picture!  They aren't 100%, but they have improved so much you wouldn't believe it.  I think it has helped to lift his spirits over the past couple of days, too. 


As you know, Ty was also scheduled for Radiation Simulation on Thursday.  Poor kid had to go under anesthesia for that and his appointment wasn't until 2PM so he wasn't allowed to eat or drink ALL DAY.  He was such a sport about it though, he barely even complained. When Ty is "NPO" I try not to eat or drink either, but I was so much weaker than he is and I snuck two cups of coffee and a granola bar!  Bad Mommy! :)  Overall, it was an okay day.  Ty was extremely cranky by the time we got home, but he is allowed. 

Friday:  We followed up with the radiation team who said they will begin ASAP, most likely Tuesday or Wednesday, and we can expect a three week course of radiation therapy.  That means I'll be driving into the city every morning again, Monday through Friday, for three weeks starting Tuesday. 

We then decided to drive out for a visit with my Mom and Dad and to spend the night with them on Long Island. Ty was in a pretty bad mood all day and he actually ended up vomiting a few times which hasn't happened in so long.  I can't tell you what this does to me and Lou.  Our minds race... we immediately worry that it could be the tumor growing back on his brainstem... or maybe he is suffering from hydrocephalus yet again... could it just be that he took his medicine on an empty stomach?   It was terrible and it caused me to be very depressed all day.  I just couldn't shake it. I was so glad, though, when Ty agreed to go to Grandma and Pop-Pop's house around 3PM. Sometimes I just need my Mommy, too.  

When we arrived Ty played nicely with his grandparent's, Gavin was having a ball, and when Ty was ready to go to sleep early (7PM) I just crawled in right next to him and I slept, too.  I was so sad and worried, I actually crashed and slept straight through the next morning.  Which, I am pleased to report, turned out to be a much better day.  A turnaround day.

Saturday:  Ty was in pretty good spirits for the morning/afternoon, and then he had a wonderful night.  Most importantly, he didn't get sick again so Lou and I were able to breathe a bit easier.  Of course, the question of why he got so sick on Friday is still lurking in the back of our minds, but that is just par for the course. 

We had a lot of visitors throughout the day including my Aunt Janie, Aunt Barbara, Great Granny and Uncle Billy, but Ty was just too shy to enjoy the company.  Instead, he wanted alone time with me, Lou, Pop-Pop and Grandma for most of the day.  At one point, I took Gavin for a walk down the block to Aunt Janie's house so he could spend some time without Ty getting so upset, and Gavin went for a swim in her pool.  It was really cute, just like him.  Here he is in a box.  Don't ask. 


That night, Ty really surprised me.  On our way home we went to Long Beach to spend time with our friends and maybe... just maybe... stay long enough to see the fireworks show (Long Beach always has amazing fireworks on the beach the week following the 4th).  During the ride in, Ty said he didn't want to go.  He cried and whined.  He said he was too shy to see his best friend, Eva, but when we got there it proved to be quite the contrary!!  Ty was terrific.  He really had fun with everyone.  It was a full house with some of our best friends on deck, and Ty played so well with everyone.  He even sat and enjoyed a game of "Perfection" with Eva, the sweetest girl in the whole world.  His coordination is getting so much better, he was able to fit a lot of the small pieces in the right spaces.  My heart was singing all night long.  It helps that my glass was constantly filled with champagne, too (thanks Anthony and Yaz!).  The boys partied all night until after 10PM, they slept the whole car ride home, and they went to bed great when we got home.  It was just what we all needed; a good night with loving friends watching our children have some fun. 

Sunday: Today was one of Ty's best days ever.  He laughed so much, I'm still smiling from ear to ear.  I was a little tired and crazy this morning, but Lou let me escape for a manicure and when I got home Ty wanted to take a nap with me.  I guess that's just what we needed because we both woke up bright eyed and happy as can be.  Ty ate like a champ all day today - and even more exciting - he went in the POOL for the first time since our Make a Wish trip at Disney (December).  He was so cute!  He was wet from head to toe and he was just so proud of himself.  Of course, no one was beaming more than Lou and I.  I still can't believe it.  My brave boy!  This tiny video snippet of Ty laughing at something on his TV show today doesn't even do it justice, but it does give a sneak peak into the laughter that filled this house today.  What a nice change of pace for us, and so long overdue.  Let's hope this continues! 



Some of you may recognize the picture on the right from Ty's Facebook page. It was taken just a few weeks before his diagnosis last summer.  I just had to put these two photos side by side because I am amazed at how much Ty has grown (!), yet that smile is exactly the same. Even after all he's been through.   Our little fighter, indeed!  Be inspired!

Wednesday, July 6, 2011

Big Day Tomorrow

Ty and me.  We had such a great day today.  It started out rocky, but was otherwise wonderful. 

He woke up early but had slept really well through the night so he was ready to "get outta heee-uh" bright and early (as he says).   The only problem was that he wasn't willing to hear me out when I explained to him that there aren't any stores open at 6 in the morning.  He was so upset he cried and cried early in the morning and I wasn't able to control him.  He kept telling me "I just sad at you!  I'm so sad at you!"  Aw, poor little guy.  It was so hard it made me cry, too.  Lou came to the rescue and calmed him down... he also allowed me to go back to bed for an hour so when I woke up we were both ready to enjoy each other. 

We took a beautiful long drive listening to music and had a fun morning full of shopping.  We went to a new and exciting supermarket that he had never even been to before ;) and we did several laps around the candy aisle.  We picked up our daily box of pre-cooked bacon.  We made a few returns that had been sitting in the trunk of my car for ages, and we picked up some new planters so we can transplant the sunflower seedlings that Ty grew over the past couple of weeks.  He was a joy everywhere we went.  He teased me by swinging his legs and kicking me because he's getting so strong, and he was able to hold himself up nice and straight in the shopping carts.  He is starting to gain confidence and I love that.  When we got home he spent the rest of the day laughing, interacting with Gavin and eating.  Mostly bacon and apple juice, probably more than 15 pieces throughout the day, but at least he is eating and it is pretty high in calories!  I want to see him put on some pounds.  Especially before we begin trying new chemotherapy drugs that may affect his taste and appetite again. 

Tomorrow we return to Sloan Kettering for a followup appointment with neurosurgery, simulation for his upcoming radiation therapy, and discussions with his oncology team on what we should try next as a systemic treatment (chemo) so we can try and keep the cancer for rearing it's ugly head again anywhere else in his little body. 

The neurosurgeon needs to address Ty's crossed eyes because they are still not back to normal and it's just not fair.  l already suspect that he won't have a clear answer for us, but I am still dying to hear what he has to say.  I want to be reassured that this takes time and that it will definitely go away. Unfortunately I have a feeling that he won't be making any such promises.  Poor kid has enough going on, he shouldn't have to deal with double vision and lack of focus when he's trying to watch his shows on TV - one of the few things he can fall back on to entertain him throughout the day.  I just can't believe this has happened to him. 

The radiation simulation is basically a practice run in the machines while Ty is under anesthesia so that the team can map out the area that will be treated and work on the calculations/calibrations so he can start his therapy next week.  We will be going in on a daily basis again, this time for about three weeks.  I will have more details once the radiation oncologist studies the results of the simulation and tells us what is the safest, most effective route.  I know I said in the past that the scariest part about radiation is that it is a one-shot deal... that Ty has already received a "lifetime" worth of radiation and anymore would cause brain damage... but that is only true in the area of the brainstem.  Ty can never receive radiation to that area again.  But the area where the mets appeared in his cerebellum did not get hit with much scatter from his original treatments so we have room to safely radiate that area as well.  And I am just so confident that it is going to work.  It's gonna work!

So is the chemo.  When we were focusing on radiation to his brainstem, just getting Ty through the six week course without any chemo because we didn't want to risk an infection that would delay treatment, two new lesions appeared in another area of the brain.  I am so scared of that happening again.  He needs to have some systemic drugs in his system to help prevent that.  I just want to give it everything we've got this time around.  Ty is doing well and I think he can totally handle it.  I know you all think so, too.  Our little fighter is nothing short of amazing. 

Tuesday, July 5, 2011

Stupid cancer

I don't feel very creative or inspired tonight, but I read this recently and it rang true with me.  I hope you can appreciate it :)  Author is unknown as far as I can find, but if there is someone I should be crediting please let me know... Of course, I took the liberty of adding my own two cents at the end.

What Cancer Cannot Do
Author: Unknown

Cancer is so limited...
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.

It cannot take away my Ty's bright smile. 
It cannot take away the number of hearts he has touched. 
Stupid cancer.  Back off and leave him alone.

Woo Hoo! Happy Fourth

We had a wonderful weekend, and I have every intention of uploading some great pictures and posting over the next couple of days.  Ty didn't make it into the pool yet, he is too apprehensive, but we did get his feet in the water and that's a great start.

Ty's eyes still aren't 100%, but he has been improving.  Most importantly, he is seeming to feel better and better about being home again.  It just takes some time.  It is always hard to come back from the hosptial, especially this time since we had to spend all that time in the PICU, finally getting discharged only to end up back in Urgent Care at Sloan just two days later.  Ty was totally confused and upset and I don't blame him.  He told me that he is mad at the hospital.  It took him several days to get comfortable again, but I think he is almost there.  He was singing songs today and smiling a lot.  That's all I want for him right now. 

Tonight we watched an amazing fireworks display at our neighbor's house.  Really, it was huge!  They went all out and it was so beautiful.  Ty stuck it out for the entire show, and he really seemed to enjoy it.  I was so happy to hear him laughing and having fun.  I didn't expect him to hang in there for so long, especially because he gets upset around crowds, but he did great!   He kept yelling, "Woo Hoo!" hence, the title of this post.

We will be meeting with Ty's radiation oncologist on Thursday to discuss next steps.  She wants to treat him with a three-week course of IMRT (the same radiation he had to his brain stem), but Lou and I have a lot of questions, first.  If we agree, it means I will be driving into the city every day for three weeks starting Monday.  Again!  Really, I don't mind, though.  Anything to beat the cancer up.  Thursday is also the end of his most recent 28-day chemotherapy cycle, and we need to discuss with the oncology team whether or not he will be put on a new drug later this week (since the Cisplatin clearly didn't work).  I would like to at least administer the Temodar again, since we don't know whether or not that was effective last time (it really didn't have a chance to prove itself), and it didn't seem to knock him down too bad.  His red and white blood cell counts remained pretty stable throughout the course.  That is important because we wouldn't want him to become neutropenic during radiation and put him at risk of having to postpone that treatment for any reason.  Right now it is most important that we can treat the site of his most recent tumor resection with radiation.  Chemo is secondary until that is done.

On Friday we said goodbye to a Doctor at Sloan Kettering who just finished his fellowship and is moving back to Canada.  He came in on his day off just to see Ty before leaving.  Vijay, we love you and will miss you very much.  Thank you for always being so positive!!  I hope you don't ever change.

Here is a picture of Ty that was taken on the 4th of July 2009.  He was happier than ever just splashing around in a puddle he found.  I love this kid!!  Can't wait to see him on his feet again.  Two more days of steroids left.  Hopefully he will continue to get stronger as time goes by. 

Friday, July 1, 2011

Home for the holiday weekend!

We are home!  And, the best part about all of this is that Ty's doctors took him off of his TPN because he is eating so well.  That means we were able to "de-access" his mediport and he can go swimming over the holiday weekend!  I hope he will give it a try. I think it would be a lot of fun for him, and great for his PT if he gets in the water and kicks around a bit.  I think the weather in NY is supposed to be beautiful.  I just hope Ty improves with each day because he still isn't 100% which has me worried.

Ty's eyesight still hasn't returned to baseline, but his eyes are improving slowly.  I was hoping to see a more significant improvement by today, so I have very high anxiety over whether or not the doctors may have missed something during our latest hospital stay.  They deliver their thoughts with such confidence that I am totally reassured Ty will be fine, right up until they walk out of the room and my mind starts racing again.  I must have asked every doctor that came into the room about whether or not it is okay that it is taking so long for his eyes to return to normal.  I can tell that they are a little baffled by it, too, but they don't seem very concerned about it either.  It's so hard for Lou and I to stay calm during days like these.  We were pretty much silent the entire ride home while Ty slept because our minds were racing with worry. 

Luckily, when we got home Ty really perked up.  He was so happy to be here, Gavin was so happy to see Ty (it was adorable), and Ty began eating like crazy which I consider a sign that he is feeling really good.  He smiled a lot and was full of "I wub you's" all afternoon.  I felt so much better after seeing that.  Right now he is resting peacefully on the couch and I can barely keep my eyes open.  I'm guessing he will wake up rearing to go as soon as I try to whisk him off to bed with me.  Per usual.

Anyway, while we wait for improvement, Ty will be chillin' in his sunglasses, passing time eating chippies and blue lollipops.  Love him so much.  So happy to be home!!!!!!  I hope Ty and Gavin enjoy the fireworks this weekend.  Happy fourth everyone!! 

WUSSUP?
Special shout-out to GLOW - a very "happy fourth" to all of my favorite Wantagh girls :) Big huge hugs. Also to Linda and Catherine, you are the best. I had SUCH A GREAT TIME last night, thank you for the spontaneous dinner. I laughed so much and it felt so good. Thank you :)