Showing posts from August, 2011

calm AFTER the storm :)

Aside from a handful of flickering lights, the Campbell's were very lucky. We have power and we enjoyed being stuck in the house together watching DVDs. Unfortunately, we do not have phone cable or internet so I really don't have the capacity to update the blog. I miss my laptop!! Overall, Ty has been tolerating his chemotherapy very well. The first night Lou and I were nervous wrecks. We had placed plastic bins throughout the house and barely slept at night because we were waiting for him to get sick. Luckily, the pre-meds seem to be keeping his nausea under control and we are so grateful for that. The first day he had a terrible appetite, but that seems to be improving, too! Thanks so much for checking in. Hopefully we will be back online soon so we can share more.

Back on meds

Tonight we are officially back on meds.  Before bed we administered Temodar, one of the oral chemotherapy medications that Ty will be on for the next 21 days (at least).  We gave Ty a large variety of anti-nausea medications and sleeping meds an hour or so beforehand so hopefully he will sleep through any discomfort it causes.   We will be giving this to him twice a day.  The last time Ty was on Temodar was in June.  At that time he was also on Cisplatin (a different, stronger chemo)  and the dosage of the Temodar was different, so I don't know what to expect this time around.  In June his taste was very altered and he did suffer some nausea, but he didn't lose his hair and the medication was otherwise tolerated pretty well.  I hope the same happens this time around, but my fingers are crossed that it was the Cisplatin rather than the Temodar that altered the taste of food because getting him to eat is already such a challenge for us. Over the past six weeks, Ty has been ween

The Road to Recovery

I think I may have posted under this title before, but after two solid months of steady improvement, I really believe that we are on the road to recovery.  I know that Ty has cancer and I know there is no end in <near> sight for his treatment, but I also believe that he will be cancer free one day and that we are heading in that direction.  After Ty's first surgery, I referred to a statement that his surgeon made several times... that we have only taken the first few strides in the marathon that is ahead of us.  After all we've been through this past year, I imagine that marathon as having a tremendous uphill slope for the first 10 miles or so, and we have just reached the height of it.  For the rest of this race, there will still be twists, turns, hills and bumps in the road, but God willing the hardest part is behind us.  I pray for that to be true with every ounce of my being.  Ty is doing so good, I just can't imagine any different.  May his first year be the wo

A new protocol for Ty - THANK YOU CHRIS!

Today we went for our weekly visit to the hospital and Ty is still doing well.   His blood work was perfect, but I’m sad to say he lost some weight.   Almost 2 pounds down, but his nurses suggested this may be because he is so much more active these days (which is true).   I just need to get a bit tougher with him about eating.   If he won’t eat better, I am going to start putting him on a belly tube feed at night so he gets the extra calories he needs to bulk up.   In the meantime, the team prescribed a medication to stimulate his appetite.  We'll see how that goes. We also had a nice, long discussion with Ty’s doctor about next steps.   I am so happy to report that we have a new plan of action as opposed to the “wait until something happens” protocol that has been in place since Ty’s last surgery.   I don’t mean to sound as though Ty’s docs were doing him an injustice by not being more aggressive with the drugs we have been using since his cancer metastasized.   We had no choic

Children's Museum and the Daily Planet

My parents had to leave late this afternoon, so I wanted to do something fun with Ty, Gavin, Grandma and Pop-Pop this morning.  We decided to head into Poughkeepsie to visit the Children's Museum, followed by lunch at The Daily Planet which was recommended by our friend and a huge hit with the kids (and me!).  The restaurant has a super hero theme and it was totally kid friendly, and delicious!  It was a great day without any real stress.  Ty learns about gardening The two of them in the fire truck, Gavin all dressed up Here Gavin is saying "Arrrr!" like a pirate We must have been in the car during the earthquake because none of us felt a thing.  In fact, this is the third earthquake I have been in and I never felt it, not once.  So, I can't really count any of them.  I have yet to really experience an earthquake and although I kinda feel left out, that's totally fine with me.  So thankful that there wasn't any damage done and no casualtie

Lots of thoughts

Thank you so much for all of the comments you made on Ty's year in review video.  I can't believe all this little man has been through over the past year.  Cancer is pure hell, but when it's an innocent child suffering it makes it even that much worse.  My heart breaks every day, even when Ty is doing so well, because I have to see my perfect boy covered with scars and medical hardware.  My friend who has had her fair-share of chronic health issues since she was a child always reminds me that surgical scars like his and hers are purple hearts, and I couldn't agree more.  I will be so proud of those scars when all of this is behind us and I will look at them as constant reminders to always strive for better.  To always be the best I can be, to do everything I can to make a difference and to help others like me and like Ty.  I know that he will, too.  He's always been such a special little boy, and he will only become more and more amazing as he grows into a young m

Ty's Year in Review

I finally completed Ty's photo compilation from the past year. It was so hard to tell his story through chronological photos in under five minutes. When I first pulled all of the photos I wanted to share, the video ran for 13 minutes :) Over the past week I worked to cut it down to five minutes, and I love it. Please share this with your friends, family and cyber networks. September is pediatric cancer awareness month (represented by a gold ribbon) and I am trying to get a head start on spreading the word. Ty's year in review is a perfect example of what hundreds of thousands of kids are going through every day in the US alone. Pediatric cancer is the number one cause of death by disease among children. There needs to be more research toward finding a cure for these most innocent victims of all. Together, we can raise awareness. Thank you. BTW - Lou and I really enjoyed the concert Wednesday night, and Ty was such a good boy while we were out. He was sleeping soundly when

May name is KIIIIIIIIIIDD Rock!

Today we spent the morning with James, Ryan and Aunt T.  They slept over and Ty had such a great time having them around.  They really keep him entertained with loads of fun, big boy games and toys.  Ty and Gavin were just being kids and totally enjoying themselves. Tonight... I am going to go out with Lou and friends to a concert!!!!!  I am a total nervous wreck and I seriously don't want to go, but Lou keeps insisting everything will be fine, that we need this, and I know he is right.  I mean, I love Kid Rock (Linda and Debi - be jealous, Catherine - stop laughing), the concert is outdoors near Woodstock and it is a totally beautiful day/evening.  It should be fun?  Oh, I hope I can let go a little and trust that Ty is fine.  This is a really big deal.  Nana and Papa are here, and so is Mely our beloved and most trusted babysitter.  Ty is in a great mood, he's eating well, he is happy.  We've gone out before, but never further than 2 miles and I always wait until Ty is

More fun with balloons

Almost as much fun as pulling on the strings of 365 colorful balloons on the ceiling, was wading through a sea of balloons on the floor!  When we left the house this afternoon to get Ty's bloodwork done, the balloons still filled the sky in the boys' playroom.  When we returned, the pressure must have dropped or something (it's been raining like crazy) and we came home to a floor covered in rainbows.  The boys got such a KICK out of that!  In fact, all those balloons on the floor inspired Ty to practice his walking for a very long time.  I know I keep bragging about how strong he is getting, but he is really walking well!  I think it will only be a matter of weeks before he can stand and walk independently!  I hope so, anyway.  He deserves this SO MUCH.  His new found independence has already changed our lives so significantly and we are only a fraction of the way there.  Please pray for Ty's continued improvement.  Today I can put Ty down on the floor in a sitting

Balloons and Bubbles!

Picture a rainy, dreary morning.  It's always on those days that the kids get up way too early, and on those days I usually chose to overindulge the night before and stay up way too late enjoying one too many glasses of wine. Something about a rainy day also gets the kids crazy!  All of you with children know exactly what kind of morning we were having.  It was dragging on, three cups of coffee still didn't cut it, and Ty was crying non-stop over every little thing.  Thankfully it wasn't because of pain or because he wasn't feeling good.  He was just tired and cranky.  I kept saying things like, "Ty... C'mon!  You know better than anyone that there are much bigger reasons to cry than the fact that your craisin just fell between the couch cushions.  What's the matter with you today?" Just at the right time in our painful day, the doorbell rang and we had the most exciting, unexpected surprise.  BALLOONS!  Hundreds of them!!  Literally, Ty received a d

365 Days of Cancer

365 days of cancer 167 nights in a hospital bed 16 surgeries 44 days of radiation therapy More than 50 CT, X-rays and MRI scans This is how Ty spent more than 1/4 of his life so far.  But, during this year-long journey, Ty and our entire family were also blessed with all of the following: 1 ride in the front seat of a Long Beach fire truck 1 surprise meet and greet with Spiderman, Batman and Superman who came to our home 1 meet and greet with Santa Claus who came to our house with the Pawling Fire Departent  1 amazing Make a Wish trip to Disneyworld 1 very special fly-by of Manhattan while Ty was traveling (thank you Patrick) 1 meet and greet with Barney 1 more meet and greet with Spiderman who visited our hotel room in Disney 1 Broadway show – Spiderman Turn Off the Dark 1 adoption by the Fordham Football Team 1 over-the-top decorated house for Christmas thanks to dozens of friends and neighbors 1 very special adopted family member in Mary Pall

We had our first scare in a while, but Ty is okay

I didn't post yesterday because Ty got sick at night.  Now that he is feeling better, I am convinced it was something he ate, but at the time I couldn't be sure and it was very frightening.  After an evening of over indulgence in chocolates, yogurt smoothies and other treats, he started complaining of a tummy ache.  Totally normal, I wasn't concerned, but I felt bad that he had painful cramps.  The scary part came when he developed a severe headache soon after.  It was bad and I ended up giving him morphine for the first time in weeks upon weeks.  He fell asleep early, woke up for a couple of hours in the middle of the night (and he seemed fine), but after he woke again in the morning he started getting sick and throwing up again.  It was so scary, I thought I was going to have to take him in for a scan.  Luckily, Ty felt better as the day went on and he was completely back to normal by the afternoon.  Of course I spoke to his nurse and we hashed out the various things that

Long day at the hospital today

The hospital was SO busy today.  We arrived this morning at 10AM for a one-hour infusion of Avastin, but we didn't leave until 4:30!  It was torture.  They were so busy that Ty wasn't assigned a bed, either.  Which means I had to find ways to keep him entertained for hours on end without being able to lie him down for a nap or a TV show.  He started asking to go home within the first hour.  It was probably payback for all of the times my brother, sister and I tortured our parent's during roadtrips :) I have to admit, though, it is kinda nice to complain about the normal musings of a three-year old.  His behavior today - although it was driving me nuts - was so normal and appropriate for a little boy who's feeling good and healthy and who just doesn't want to wait around anymore.  His bloodwork was 100% normal for the first time since - I don't know - probably October 7, his very first day of chemo.  I am not exaggerating.  His red blood cells, white blood ce

How did we get here?

One year ago today I put Ty down to bed around this time and he woke up just a couple of hours later. We had just returned home from our annual vacation at the lake the week prior, and ever since we got home he was increasingly whiny and restless each night. He always woke up, asked us to sleep in the room with him, wanted to move to the couch in the living room, and then he would just whimper and let out these sad, high-pitched cries for hours on end. During the day he was perfectly fine other than being utterly exhausted (as were Lou and I), but there was something wrong each night after his head hit the pillow. We thought it was behavioral. That maybe during vacation he was having so much fun staying up and watching shows with his cousin that he was now fighting sleep. I still regret how I would yell at him at night, "STOP IT, TY! JUST STOP IT!" Lou and I were so irritable in the middle of the night, losing our patience with his antics. But on this very night, 365 days

Vacation recap

We are home and everyone is doing great.  We spent a week at the lake with Grandma, Pop-pop (my parents), Uncle Harry, Aunt Theresa (my sister), and our nephews James and Ryan.  Aunt Debi and our beautiful niece Deanna also came to stay with us for a few days.  The kids all had such a great time and there's nothing better than spending time like this with family.  We are so grateful for such a wonderful week.  Tomorrow we hope to have a nice, quiet day at home before we return to the hospital on Monday for routine bloodwork and Ty's next dose of Avastin.  We should begin the oral chemotherapy this week as well, hopefully ASAP.  I tried to capture this past week in this video.  Enjoy!  XOXO.

Amidst smiles, my heart aches

Tomorrow we are heading home.   I am ready to go, but also sad to leave.   I think I always feel that way toward the end of any vacation.   We have had great luck with the weather – nothing but beautiful clear and sunny days.   We enjoyed fires on the beach at night, boat rides and sand castles during the day.   I shouldn’t be sad.   Ty has been so happy during our time here.   He looks absolutely amazing, he is getting so strong and he is gaining more and more confidence in himself.   He is feeling good.   No headaches, no vomiting in several days.   He is eating well - although he drives us crazy with how picky he is - and he hasn’t had a single accident since he was strong enough to get back on the potty a couple of weeks ago.   I’m so proud of him.   He is so strong, and so willful.   He is my dream come true. I have been enjoying our time here immensely, but I would be lying if I said this vacation has been filled with 100% happiness.   Instead, my heart aches with every beauti

Having a great time in the Adirondacks

We are having so much fun at the lake.   Since I have very limited access to the internet (I’m going to try and post from the local library) I am going to share a bunch of pictures to help show how things are going so far. Ty did get sick twice when we arrived at the rental house, but I’ve been giving him medication and it seems to be under control.   He also lost the hair in the back of his head the day we got here as a result of the radiation, so we are finding hair all over the furniture, his clothes, etc., but he doesn’t seem to realize what’s happening.   Lou brought an electric trimmer with him so he tried to create a “fade” and it looks fine.   We are here with Ty’s amazing cousins James (7 years) and Ryan (6 years) – and James allowed Lou to trim his hair, too, in order to show Ty that it’s not a big deal.   Besides, Ty is so handsome, a big bald spot can’t change that J James has been entertaining Ty non-stop with magic tricks since we arrived.   He has new “Harry Potter”