Showing posts from July, 2011

no internet access at the lake house but so far so good!

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 every

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 give

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

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 ar

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

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 o

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


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 lo

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 w

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&


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 fo

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

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'

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 u

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 p

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'

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 ever