Friday, October 28, 2011

NBC Segment!


NBC New York ran a story about Lou and Fred's Team on the evening news yesterday!  It will also be running throughout this weekend (watch it here http://www.nbcnewyork.com/video/#!/news/local/One-Fathers-Special-Reason-to-Run/132827623).  There was some adorable footage of SuperTy at the doctor's office as well :)  Lou is one of the top ten fundraisers for Fred's Team among more than 700 runners on the team - and we hope over the next few days he can be among the top 5!  We are so proud of him.  As you know, this is a cause that is so near and dear to us because Fred's Team funds go directly to research at Memorial Sloan Kettering Cancer Center (where Ty is being treated).  This research saves lives.  Thank you so much for supporting Lou in this accomplishment of a lifetime :) 

CLICK HERE to make a donation on behalf of Lou.

Thursday, October 27, 2011

F#@% the other shoe!


My friends have been worried about me. I guess my posts lately have been a little weary and I sound fatigued.  These peaks and valleys are to be expected after all we've been through.  It can be hard to avoid living in limbo and waiting for the other shoe to drop.  Well, to quote my friend Linda, "F--- the other shoe!" 

She's right!  There will be no other shoe dropping.  I am totally inspired to turn my attitude around.  Even at four in the morning I feel really good despite the fact that it's often these middle of the night ramblings that tend to bring out my worst fears.  Of course, the fact that I am wide awake at four in the morning is another issue that I will have to conquer at some point, but for now I can be friends with my insomnia.  I should try to use this time to accomplish some long overdue tasks, or just some mindless online shopping to clear my head ;)  Ty had such a great day today, I am looking forward to tomorrow.

In fact, I just saw an email from another friend who stopped by the house today and she said that Ty looked better than she has ever seen him (and she has seen it all... the good, the bad and the ugly over the past year).  Better than ever!  She's totally right, too.  He is a superstar. 

He is still coughing a bit so I decided to put off his bloodwork until tomorrow.  He also felt a little nauseous this evening after I gave him a shake through his G-tube to try and help his digestion (I guess I only made it worse).  Otherwise, he is happy as can be and he even had a decent appetite today!  He was eating chicken for the first time in weeks.  That and Welch's fruit snacks. Better than nothing, I'll take it!  He also had an amazing workout with his physical therapist this morning.  He is really gaining confidence on his feet and she was so impressed.

I was looking at his bare legs tonight when he was changing into pajamas and I swear there is some meat sticking to those bones.  Finally!  The scale has been saying otherwise, but I can tell that he is gaining a lot of muscle.  It allows me to worry less about whether or not he is eating enough when I see him gaining weight.  You will all hear me singing from my rooftop when he finally reaches 13 kilos.  That's how much he weighed the very first day that we checked into the emergency department at Cohen's Children's Hospital because our baby wasn't sleeping well.  Right now Ty weighs 12.1 kilos (which is about 26.5 pounds).  In May and June he weighed as little as 10 kilos (22 pounds).  Now... I know I can easily gain five pounds in a week, let alone three months, but for Ty that is a really big deal :) 

The other day I hung a growth chart in the boys' room.  It was the same one we used in our Long Beach house, I just neglected to hang it ever since we moved.  I was a little discouraged when I stood Ty against the chart because he hasn't grown at all since last September, but some of that can probably be attributed to his core muscle weakness and the fact that he doesn't stand as tall.  Gavin, on the other hand, is impressive :)  He is exactly 2 and a half years old, he is slightly taller than Ty and weighs a whopping 37 pounds.  People ask me if Gavin is Ty's older brother.  Ha!  Lou and I both envision Gavin as a tough kid in school who will stand up for Ty if there are ever any problems.  Ty is such a funny and charming little boy that I can't imagine him having a tough time, though.  I guess you never know, kids can be cruel, but Ty always made fast friends and I think he has a fun-filled life ahead of him.  He deserves it.   

Goodnight all.  Here's to a fun-filled life full of rainbows and sunshine!!!!

Tuesday, October 25, 2011

Pajama Day

I had a lot of fun with Ty and Gavin today.  Gavin was a little off the wall, but he makes up laugh.  Ty is feeling so much better with the exception of a nagging cough.  I give him a prophylactic antibiotic in order to avoid the development of pneumonia (should he become congested in his lungs), but I think this will subside in a few more days.  He is tired from the new meds, but in such great spirits.  I am so happy that he is happy and having fun, regardless.  You should see him walking!  I will have to post a video soon, he barely needs support anymore.  He is doing great!!  Today we started supporting him with only one arm to help his balance and he is otherwise doing so much of it on his own.  I am beaming all over whenever he goes for a walk around the house.  He gets around so much by scooting across the floor, too, that I actually lost him twice in the last week.  Can you imagine how great it felt to have to peek around the corner in the kitchen to find out where he was?  It was amazing.  He finally has some mobility which allows him to play so much more independently.   

There are two things weighing on my mind tonight, but not terribly.  First, I wish Ty didn't have to stay home from preschool for such a long stretch because I worry that it will be difficult for me to get him back into the routine.  I think I'll get his bloodwork done locally tomorrow to see where we are at.  You should have heard the little actor when I told him we should stay home from school because he was a little congested last week.  "Yeah... I have cough... I can't go school... maybe some gummy worms will make me peel bedda?"  This was first thing in the morning, mind you. 

Second, I wish he wasn't losing his hair again after all this time.  It isn't falling out in clumps like it has in the past, but it is noticeably thinner and he's losing a little more each day.  I thought since we lowered the dose of his daily chemo that maybe this would stop, but it hasn't so far.  On the bright side, Lou and I did notice some very slight hair growth on his giant bald spot in the back!  This is so reassuring.  We are hoping that maybe the permanent hair loss from radiation to the back of his head won't always be as prominent as it is right now. 

In re-reading the previous paragraph I realize how lucky I am that we continue looking so far into Ty's future and I apologize for any negativity otherwise.  Take every hair on his head, that's the least of our concerns.  We will do whatever it takes.  We are so blessed and so grateful. 

The past few days have been pajama days at our house.  Those can be the best days of all :)  Gavin and Ty are gearing up for Halloween by preparing their bellies.  They have been indulging in candy like crazy and the trick or treating is still almost a week away!  I just ordered a pound of Dr. John's Sugar Free lollipops to see if I can put a stop to their inevitable cavities!

Here's Ty enjoying an ice pop at Aunt Debi's and Gavin goofing around with some "vampire" teeth that we received from the Allen family. 




Goodnight everyone.  Sweet dreams.





Monday, October 24, 2011

Brain Tumors Suck


I don't consider myself weak, nor am I all that strong... but I do still cry often despite how amazing Ty has been doing.  I am sure that I will be so much better off, mentally, once Ty's scan on November 8th shows no evidence of disease.  Until then, I will continue to worry about his drooling and his eyes.  His eyes are just "off" ever so slightly.  I'm not the only one who mentioned it... Lou has been worried about his eyes, too.  His doctor says it can be from overall weakness as a result of the current chemo, and I have to believe he is right.  The cyclophosphamide he is getting this month has taken a worse toll on him than the previous meds - his counts are low, his hair is thinning and he has mouth sores - but Ty seriously never complains.  He is much more tired and cranky than his usual self, but other than that he laughs his way through the day.  

Today I was holding him while we looked through some of his toys in storage downstairs.  He saw a big basket with the parts to his trainset and asked me to bring it upstairs.  I shifted his weight on my hip and hoisted the clumsy bin onto my other hip.  As we were climbing the stairs, Ty was laughing like crazy.  I asked him what's so funny and he said... "Mama!  You Soupy Mom (super mom)!"  Best compliment ever.  If I were really Super Mom, I would be the one fighting the cancer and taking chemotherapy every day, not him.

The Circus
Yesterday we took the boys to the Big Apple Circus.  The entire event was sponsored by the Children's Brain Tumor Foundation, and the performance that day was reserved only for brain tumor families.  The fact that we could fill that tent had me so mad!!  It's so unfair - these hundreds of victims are innocent children!  There were 1,600 people in attendence. 

Brain and spinal cord tumors are simply devastating.  They can steal the ability to walk, talk, eat and see straight.  They damage cranial nerves that are responsible for facial expression.  They impair learning, memory, coordination and balance.  They strip kids from being able to be themselves.  Just when I was starting to tear up over the realization of how widespread this is (and the circus tickets were only distributed through a small number of NYC hospitals), a gentleman from the CBTF board of director's came out to welcome everyone and kick off the show.  He had his young children with him.  He is an 18 year brain tumor survivor and I would have never guessed it.  Awesome!  That's what I want Ty to do.  To never forget, to talk about being a survivor, and to be active in helping to find a cure some day.  I don't want to ever put all of this behind us.  I want to carry it into our future.

We weren't allowed to take photos inside the tent, so I don't have anything to share at this time :)

The Guardian Brain Foundation
While we are on the topic of brain tumors, I need to talk about Mary Pallotta.  She is the founder of the Guardian Brain Foundation.  Although we still have yet to meet in person, she is like family to us.  She created this foundation to honor her brother who passed away way too young from an aggressive brain tumor.  She sends the most endearing notes, we have the most heartwarming and supportive conversations, and she has given countless gifts to Ty and me that will forever be cherished.  She is so special and I admire everything she does.  The Guardian Brain Foundation has done so much to support my family through all of this, and it is 100% a volunteer effort.  If you live in Long Island, she will be hosting the annual Butterfly Ball on November 18th.  Please consider attending, it is a wonderful event.

Fordham Football
Ty's big day at the football stadium is fast approaching.  We hope to be able to attend the big game at West Point this Saturday.  Ty and Gavin both have football jerseys and they have been throwing the ball around to get ready (the best they can, anyway).  In the meantime, I wanted to share this article with you all that ran in the Fordham Newspaper right around Ty's birthday.  A friend shared it with me just today, I was otherwise unaware.  I think it's such a sweet article on Ty and his relationship with the team through Friends of Jaclyn.  We can't wait to see them all again!

Marathon Training
Lou is still in the middle of his grueling training regimen for the upcoming NYC marathon.  It has been so hard, but he is dedicated to completing this race in an effort to raise funds for pediatric cancer research that saves lives.  Children are suffering every day, and Lou is determined to help the cause as much as he possibly can.  He is ranked among the TOP TEN fundraising individuals for Fred's Team out of over 700 runners.  I am so over-the-top proud of him.  I can't wait to see him at the finish line with Ty in my arms.  And, I can't wait to see him on NBC in upcoming weeks!  I am over the moon knowing that a whole new audience will be introduced to Ty's story as a result.  Thanks so much to all who have supported Lou's big run. 


Sunday, October 23, 2011

The brightest star in the sky

On the night before Ty went to the hospital for his very first surgery, Lou and I took him down to the beach at dusk.  The weather was a perfect, mid-August night with a beautiful breeze, an amazing sunset, and calm, rhythmic waves.  It was one of the most depressing nights of my life.  I've probably written about it before, but it has been on my mind alot lately so it bears repeating. 

Ty was already showing signs of the tumor.  His speech was slurred, he was drooling, and he suffered from headpain.  All three of us were very quiet and there was a numb sadness around us.  Ty seemed to be particularly heavy.  It was as if he knew why we were on the beach that night, trying to enjoy one more beautiful night with our beautiful boy before officially entering the horrific world of life after cancer. When the sun set, we looked up in the sky and I asked Ty to pick out a star that we would designate "Ty's Star".  Of course, he chose the north star - the brightest star in the sky - and it couldn't be more appropriate.  He certainly is the brightest star in the sky, and I am sure to point it out to him whenever we are looking up in the sky together. 

I can't tell you how many times I stare up at that star and wonder if that will be where his spirit lies in the future.  If I will be talking to and praying to that star every night; or if it will instead symbolize his awe-inspiring life here with us instead of his unending life after death.  I hope and I believe it will be the latter.  I won't ever look at a starry sky again without thinking about Ty and his amazing fight. 


I haven't written for several days, mostly because we have just been so busy, but also because I haven't had the energy at night.  I have been doing really, really well - we all have - but there are still some nights when I can't shake the sadness.  In the past I would turn to writing about the day to make me feel better, but lately I can't find the energy to write/talk/read... anything.  Tonight I was thinking about how many people have reached out to Ty lately to show support, and I realized that I need to stop wallowing and share a detailed update, so here it is.

Ty's current health
Yesterday was a very exciting day at the hospital, but first I will share the less exciting details.  Ty is borderline neutropenic.  His white blood cell count has dropped to a dangerous level so I will be keeping him home from preschool (and just about anywhere) until his CBC shows improvement :(  He has a slightly congested cough, but the team wasn't too worried about it for now.  However, if Ty runs even a low-grade fever, we will have to be inpatient at the hospital for several days.  Fingers crossed that doesn't happen.  This has been the longest stretch we have ever gone without spending a night in the hospital (by a landslide, three months+) and as much as we miss our amazing nurses over there, we want to avoid going back there at all costs!  The good news is, he gained .3 kilos (about 1/2 pound). 

The advantage to daily chemo (every day, twice a day instead of one huge dose at the beginning of the month) is that the medication is only in his system for 24 hours or so, and the doses can be adjusted so he takes less when his counts are low to allow his blood/bone marrow to recover.  Yesterday we lowered the dose of his daily chemo and his doctor expects his counts to jump right back up again within a couple of days.  When he had high-dose chemotherapy infusions, that was much different.  When his white blood cell counts started dropping there was nothing we could do to stop it.  His ANC (absolute neutrophil count) became dangerously low every time.  He has had GCSF shots, but those don't work immediately either, so poor Ty ended up with an infection every single time because his little body couldn't fight the germs.  This time it will be different!

Big Apple Circus
Ty's neurosurgeon recently gave our family tickets to join him and several other patients' families at the Big Apple Circus tomorrow.  We thought we were going to have to cancel and I was so bummed, but after talking to Ty's doctor I was told it would be okay to go.  Given the fact that we will be in an area with a large group of children in the same condition as Ty, lots of precautions will be taken and Ty can wear a mask so he can still enjoy the show.  I am so excited for him!   

The show is tomorrow at noon.  Gavin will be with us, and I know both boys are going to absolutely love it.  They are so lucky!  I will be sure to post pictures ASAP.  Afterward we will be going straight to Aunt Debi's for one of Uncle Rich's amazing dinners and, of course, football. 

NBC!!
I hate to put the cart before the horse, so I will only share a few details...  A news crew from NBC was at Sloan Kettering yesterday to interview Lou about the upcoming marathon.  Ty was on camera, too.  We knew this was planned, so I brought a package with me to the hospital to bribe Ty.  It was something that came in the mail and it was so beautifully wrapped (I had no idea what was inside) I decided it would be the perfect thing to get Ty excited about the cameras.  It worked really well and he was SUCH a good boy.  The incredible gift, it turns out, also had me in tears!  (Lorraine and Kristin, we never met but I am amazed at how we are connected!!)  Thank you. 

After the interview, Ty became really tired.  The hospital is always so crowded and we didn't have a bed assigned because his infusion was only suppose to take an hour or so.  Instead, we had to sit on a couch in the waiting area while Ty received his Avastin - this is the usual.  Also, since he had a cough Ty had to wear a mask and he wasn't allowed in the playroom to protect the other children. 

This became a bit of an issue because the child-life specialist for the neuro-oncology patients had planned a belated birthday party for Ty that day.  Instead of celebrating in the toy room, I was told his doctors and nurses would have to bring the party to us.  Well, I am embarrassed to say that Ty was NOT a good sport about it.  I mean, they came over with a huge poster for him, a pile of presents and a cake and all he did was yell and cry and send them away.  Oh boy.  What can I say, it happens.   He had a long day and he just wasn't in the mood no matter what.  I am posting pictures that his nurse took afterward, though, to prove that he just needed a little time and a little less attention in order to enjoy the gifts.  Thank you so much to all of his doctors and nurses in neuro-oncology :)   And to child-life who pulled together the surprise party for Ty, it was all really very thoughtful.  I wish Ty had been more appreciative at the time, but here are the pictures to prove that the thrill of the birthday celebration wasn't completely lost ;)



By the way, before I end this post I want to point out that Ty is wearing jeans in the above picture.  This is huge.  This is the first time we've gotten him out of his sweatpants and into some more normal clothes in forever.  And the trend continues!  Today he wore corduroy pants.  He is getting bedda!  Goodnight everyone.  Thank you so much for all of your prayers, positive thoughts and unending support. 

Tuesday, October 18, 2011

Fun with Spot

It was Ty's turn to take home the "class pet" this week.  We had a lot of fun with Spot over the past few days.  As long as Ty wakes up feeling well, we will be returning him tomorrow.  Here is the cute note that we included in the class journal...


"I really enjoyed taking home the class pet over the weekend.  We had some beautiful weather so Spot joined us on a nature hike.  We hunted for bears the entire time and we even came across a huge cave that me and my friends think used to be home to some dragons!

We also took Spot to the playground with us!  He was scared to try the slide, so he stayed on the bench like me.  After a while, though, we gave it a try and it was really fun!  Mommy held our hands so we could climb all the way up to the top, but we slid down all by ourselves!  All of that exercise made me really tired, too, so we took a nice nap together during the ride home."


Ty woke up a little bit congested today.  I skipped his morning dose of chemo until I got a hold of his doctor.  We moved forward with the evening dose at bedtime.  He is sleeping right now, so I don't know how this is going to make him feel just yet.  Hopefully he will tolerate it well.  I am jealous that he is sleeping so soundly and I am going to try to do the same soon.  Maybe some tea and a book, my new routine, will help to make that happen :)  No more late night cancer research! 

Lou reminded Ty that the last time he stood independently on his own two feet was Halloween 2010.   He challenged Ty to keep up the good work and to try and do the same this year.  I would love more than anything to get a photo of him all dressed up and standing by himself.  I know he won't be able to walk without support, but I think we may be able to get him to stand for the camera donning his IronMan costume.  He is so excited for Halloween, we are all looking forward to it. 


Sunday, October 16, 2011

Another New Chemo Cycle Begins

Ty and Gavin went to see Max and Ruby at the Mid-Hudson Civic Center this weekend.  For those of you who don't have small children, Max and Ruby is a cartoon on Nick Jr. that is very popular among preschoolers.  It is Ty's absolute favorite, and we watch it over and over and over. I wasn't able to go, but Lou was there and he told me that it may have been the most excited he has EVER seen Ty - maybe even more than when he saw the Yankees; of course, that's just because he's so young and he doesn't know any better ;)  In the meantime, I had the best time on Long Island with my favorite girls.  I was there for my cousin's baby shower and stayed late to hang out with some of my oldest, bestest friends.  I can't tell you how liberating it was to be out all by myself.  It was the best thing I've done for myself since Ty got sick.  My friends are my best therapists :)

Thanks to the amazing PR folks at Max and Ruby (they saw his story in the Poughkeepsie Journal that stated he was a big fan) and the President of the Civic Center who reached out to us this summer - SuperTy and Gavin were given front row tickets and got to meet Max and Ruby in person before the show.  Lou tells me Ty was clapping, dancing and singing along like it was the best day of his life.  I am so happy for him. 




Today marked 21 days that Ty has been taking Etoposide (chemotherapy) orally twice a day - among many other meds.  His red and white blood cell counts, and his platelets, decreased slowly over the past three weeks but he never became neutropenic which is terrific - he is borderline right now.  The meds this time around have been pretty good to him!  Other than increased fatigue and weakness combined with his ongoing lack of appetite, Ty has been a happy, playful little boy.  I swear, he smiles more than anyone I know and he just loves to joke around.  He never fails to amaze me. 

Tomorrow begins another new cycle.  We will be switching out the Etoposide for Cyclophosphamide (a different oral chemo) and we are adding Accutane.  Anyone who knows this drug for its qualities to treat acne might be confused - and so am I to be honest.  After talking to my doctor a dozen times and reading up on all of the biochemistry specifics, all I can tell you is that Retinol controls cell differentiation and cell death during embryonic development so it is believed to encourage cell death if a genetic/cancer mutation occurs.  It is the accepted protocol for treatment among neuroblastoma patients when they are in remission (another terribly aggressive cancer in the central nervous system that is common among small children) and the results are promising.  This is all quite experimental.  There are no studies or examples of children that are the same as Ty, but so far we are so happy with how he is tolerating his therapy.

We are told that the Cyclophosphamide will knock Ty out more that the previous chemos he has taken orally.  I hope it isn't too bad, because he is doing really well and I hate to see any of his miraculous upward progress put on hold.  I still plan on taking him to preschool this week until he gets his bloodwork again later this week.  Fingers crossed for some relatively smooth sailing.   Just the thought or any additional suffering for Ty makes my heart hurt, so I pray Ty can tolerate this new regimen as well as he has the previous two. 

Thank you all so much for praying for our superhero, following his story, spreading awareness, and for all of your thoughtful notes, emails, gifts and random acts of kindness toward my family.  We are so blessed and forever grateful.  All of our love to you all. 

Thursday, October 13, 2011

Fred's Team - NYC Marathon

Many of you may already know that Lou will be running his first marathon in honor of Ty.  The training has been rigorous, but Ty's strength inspires Lou to succeed.  I am so proud of him!  He is running as part of Fred's Team to raise money for cancer research. Named for Fred Lebow, legendary runner and founder of the NYC Marathon, Fred was diagnosed with cancer in 1990. He dedicated his 1992 NYC Marathon to cancer research for Memorial Sloan Kettering Cancer Center (MSKCC) and raised nearly a million dollars.  Since its inception in 1995, Fred’s Team has raised more than $42 million to fund pioneering research that saves lives and brings hope.  Fred’s Team has been a major source of pediatric cancer research.  Please read Lou's story below.  If you wish to support him, please vist http://mskcc.convio.net/site/TR/FredsTeamEvents/Freds_Team?px=1969708&pg=personal&fr_id=1460 


Help me Make a Difference in the Race against Pediatric Cancer
My name is Louis Campbell, the proud father of Ty Louis Campbell. When Ty was just under 3 years old, over one year ago, he was diagnosed with cancer.

I have competed in many running races, and over the past couple years I"ve developed a passion for triathlons. So running is not new to me. However, 26.2 miles will be a first for my giant frame! The New York City Marathon has always been on my bucket list, but now I have a very special reason to run it.

In the past I have always made such a big deal about my birthday. Before Ty got sick, I always imagined my 40th birthday would involve some kind of exotic trip or extravagant party. However, not too long ago, my wife asked me what we should do for my birthday and I said that I just want to celebrate with Ty.

So this year, on my 40th birthday (November 6, 2011), my sister Debi and I will be running the NYC Marathon for Fred's Team to honor my son. Ty will be there to meet us at the finish line and wish me a happy birthday.

Ty has been receiving treatment at MSKCC for the past year and is still fighting strong. Ty's cancer is in the central nervous system. It is very rare, very aggressive, and to put it simply he has been to hell and back. Below represents some of the (new normal) that Ty has been subjected to over the past year.

· 365+ days of cancer
· 167 nights in a hospital bed
· 16 surgeries
· 44 rounds of radiation therapy
· More than 50 CT and MRI scans

On Sunday November 6th, I will dedicate this marathon to pediatric cancer research to help the children who were crying when I fell asleep and who were still crying when I awoke during the 167 of the 365 nights I spent with Ty and my wife on the 9th floor at MSKCC.

Please help me to exceed my fundraising goal toward pediatric cancer research. All donations are tax deductible and if you own a business your generosity will either go to cancer research or to the government who will tax you on it as of December 31st.


So many of my friends, family, neighbors and even complete strangers have already made very generous donations on my son's behalf. Please know that my family and I are so blessed and we thank you from the bottom of our hearts. I hope our story will inspire those who can to continue donating to the cause until there is a cure. We will never stop asking as long as there are families like mine and children like Ty who fight for their lives every day.

Thank you

Lou

Tuesday, October 11, 2011

Pumpkin patch

This morning we went on a school field trip to the pumpkin patch.  Gavin joined us and they were so cute picking out their pumpkins.  Unfortunately, they weren't very willing to smile for the camera, so this is the best I could do... Gavin hunting for the perfect pumpkin... Ty holding up his tiny pumpkin during our hay ride (actually, a little girl in his class picked it just for him and he loves it)... and Gavin with a couple of farm fresh apples. 





When we returned home, it was so beautiful outside I decided I should put some spring bulbs in the ground.  Ty actually picked them out.  He asked me to buy tulips and daffodils in the supermarket a few weeks ago and we ended up with several bags full of all different colors.  This is not something I would have opted to do if it wasn't Ty who asked for the flowers :)  I don't really know what I'm doing.  Anyway, he wanted to help me so we went outside and he was such a trooper.  I dug the holes and he threw in the bulbs.  He also admired the worms we unearthed every so often.  Then we played with his toys in the driveway for a little while before heading back inside.  It was really nice and Ty was more physically active than usual which is always a plus.  I think he was inspired by the weather to try harder. 

Of course, thinking ahead to Spring is a scary thing to do.  I wonder what our life will be like when these flowers are in bloom and if Ty will be running around - the picture of health - or not.  I hope and pray that he will be returned to his optimal health by that time, and it's simply unacceptable to think otherwise.  I just know that those tulips and daffodils are going to look beautiful next year.  Ty is going to love them.  He will be so proud (as will I)!

Happy Birthday Mrs. Sullivan - one day late.  Love, Ty.   

Monday, October 10, 2011

Wishing every day were Groundhog's Day

Ty is doing great.  We were at the hospital on Friday for a chemo infusion and his bloodwork came back good.  His counts are declining as expected, but still strong enough that he can continue going to preschool and thank goodness because tomorrow he has a field trip to the pumpkin patch that we are all looking forward to.  Gavin is invited, too, and I will try to get some good pictures if they will cooperate.  Here is a recent photo of the two of them sharing a blanket on a chilly Fall morning.  Ty is actually nibbling on a cheese stick - a rare moment :)



He is on his last week of this "cycle" so he is more tired than usual and he has no appetite (nothing new there) but otherwise we can't complain.  He lost two pounds over the past week so I am stressed about calories, but with the help of additional supplements we should be able to get him back on track ASAP. 

We are having such amazing weather here in New York so we made every effort to get outdoors over the weekend and enjoy some family time.  While we were in the car at the end of a long, fun day on Sunday, Lou and I had a serious conversation about how we are both feeling now that Ty is improving.  Ecstatic, obviously, but also scared as hell as you all know.  Lou said that he has this impulsive dream of grabbing me and the kids and running off to live in a cave.  I didn't understand.  Then he explained that he feels like if we hide for the rest of our lives, that the cancer wouldn't find us again. 

He said he is living each day wishing it were Groundhog's Day.  Meaning, that he wishes time could stand still and we could keep living in today because we are so afraid of tomorrow.  I couldn't agree with him more.  For over a year, Lou and I were living in survival mode, and we both think it was easier in a number of ways because we lived in the moment and refused to look ahead.  I can't wait for the days when Ty has been "bedda" for long enough that we can breath easier again.  How long does that take?  Because right now I'm not sure I'll ever breathe like a normal person again. 

I don't mean to sound negative during these most amazing, happy times.  It's just scary, and I have a hard time escaping that fear.  Especially during my quiet time at night when I am sharing my innermost thoughts online.  Please know that Lou and I are so happy and enjoying every minute with this amazing, miraculous, little fighter of ours.  He is such an incredible boy and he amazes us every day.  Look at the determination on that face as he scoots across the floor.  He is getting so strong and really eager to get around on his own.  I love it! 


"Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think." Christopher Robin to Pooh
In case you didn't see Ty's Facebook recently, there was a great article in Huffington Post today.  Please share it with your friends to help us share Ty's story of strength, perserverance and triumph.  Thank you so much for your continued love and support.   All of our love to you all. 

Thursday, October 6, 2011

Looking ahead

For some reason, I am drawn to this picture.  I can relate.  It's not the Mary Poppins likeness so much (I am by far the opposite of Mary Poppins) but I like the idea of letting go and trusting a whimsical umbrella.  An umbrella can't really hold me up in a storm of bad news, it can't even protect me from the rain if the storm is bad enough, but still it is comforting to have one in the trunk of my car at all times.  I like this picture because it makes me think of an uplifting sunshower instead of a dreaded downpour.  The best kind of rain is when you can dance in the puddles while the sun is still shining.  The kind that ends in rainbows (and you all know how I feel about rainbows, there isn't a more beautiful or fitting symbol of hope). 


Ty continues to do well on his new chemotherapy regimen.  I am starting to get anxious for his next scan, which is scheduled for November 8th. I feel it creeping up on me, breathing down my neck ever so slightly.  I am confident that the results will show no signs of progression because Ty continues to improve in every way, but how can I not be scared?  As you all know, we have been knocked down so many times over the past year (click here for Ty's year in review youtube video), even during the times when we were the most positive.  Even when there was no doubt in my mind that everything was okay, things weren't okay.  But this time, things are different because Ty's most recent scan showed "no evidence of disease" for the first time ever. That's why this is so different.  Ty's tumor was so aggressive, that it broke through even the strongest chemotherapy in the past.  It was always doing "something" on his scans.  Now, it is gone.  DEAD!  At night, I envision any existing cancer cells left in his brain exploding.  Like a video game where I can will them into complete oblivion.  Die, cancer, die!  Never, ever, ever, ever, ever come back you disgusting disease.  LEAVE HIM ALONE!

I believe with all of my heart and soul that it is the love, the positive thoughts, the acts of kindness and the prayers that have been sent his way that have made this happen for Ty.  And, of course, his individual strength and unwavering will to beat this. 

Ty had his bloodwork done less than a week ago and it showed he is still strong enough to be out in public, so Ty continues to go to preschool.  Today was his fourth time there, and he was cuter than ever.  Sometimes I am overly paranoid because he gets so sidetracked and I worry that the long term effects of radiation to his brain are already beginning to show (like when the teacher is talking about the weather and Ty interrupts her, pratically yelling across the room, to tell her something nonsensical about his favorite TV show).  It's silly, I know, all kids to this.  I am happy he gets excited and wants to share with his classmates so I let it roll off my shoulders for the most part.  But I can't ignore that gnawing worry that it could be more serious down the road. 

You know, as I'm writing this I'm reminding myself that I sound ridiculous.  He is here when he wasn't expected to survive his cancer more than six months.  He is here and has no evidence of disease, which we were told wasn't possible.  Who cares if he has a little trouble focusing at school, if he has permanant hair loss, if his scars don't heal well or if his grown up teeth don't develop properly  (as his dentist warned me yesterday).  Seriously.  Who cares!  As long as my baby stays here with us.  As long as my SuperTy continues to beat the odds and beat up his cancer... then we can conquer anything else that lies ahead.  Oh... what a life he will lead.  I just know it! 




Wednesday, October 5, 2011

Thank you for the birthday blessings

Yesterday was the greatest day.  It was a miraculous day on so many levels, and it was the best birthday ever even though we did nothing much at all.  Lou took off from work, and we just enjoyed our day together as a family. 

We went to preschool in the morning and Ty was such a sport about it.  He was really very happy to be there and I think he is getting more used to the idea of going regularly.  I wish I didn't have to accompany him (so that he could be just like all the other kids) but at the same time I am so lucky that I get to observe all of the edible cuteness in that room!  Those preschoolers just melt my heart.  They do the cutest things.  I think the boys in Ty's class don't even notice that he has trouble walking or that I am his Mommy.  They play cars with him and all the regular boy stuff.  The girls are more observant and they watch him a little more closely.  At the same time, they are also more forward.  Yesterday one little girl came right over to sit next to Ty at circle time and she grabbed his hand.  Another little girl saw this, and ran over to try and wiggle her way in between them so she could also get closer to Ty.  It was so sweet.  I was so happy to see them friending Ty so easily.  Just proves that he really is a lovable little boy (and I'm not just saying that because I'm his mother). 

In an effort to protect everyone's privacy, here is a glimpse of the circle time action without exposing the other children.  Ty tried to sing along and do the little dances just like his classmates. 


We brought in some mini brownies and muffins for Ty's classmates, and he blew out a candle.  Ty refused to wear a birthday crown (he said "no, that's not cool"), but he did enjoy being the center of attention during the happy birthday song.  Here he is afterward wondering where he can get some more brownies (I actually ate his because he doesn't eat anything like that these days, but he was confused and wondering where it went).  Awww!  I feel bad after seeing this :)

 
Later last night, we snuggled up together nice and early and called it a day.  Ty was pretty restless by 4AM so it wasn't a very good night's sleep.  I think it was probably all of the excitement from the day before! And, all of the exhaustion from opening up such awesome presents :)

This morning he was nauseous from his medication, but nothing too bad.  Worse than that is the diarreah he has (sorry for sharing, but it's true).  He has had this issue for weeks on end due to the oral chemo, and it's ruining his appetite.  I actually had to take a stool sample into the local lab today and it was one of those mom moments where you find yourself doing completely disgusting things for the love of your life.  I will spare you the details, but let's just say it involved taping a plastic bag under his potty seat with a large enough hole so we could aim his "pee" outside of the bag.  It was a disaster.  I didn't hear about the results yet, but fingers crossed that he doesn't have any bacterial or viral infections causing this.  I really think it is just a side effect from the meds, but we have to be sure before we can properly treat the issue. 

Other than that, which is no big deal, Ty is doing terrific.  He has been so happy.  He is so excited about getting physically stronger, too, that he is completely wearing me out.  He wants to walk around the house constantly, he wants to practice crawling (which requires a lot of support because his arms are so weak), he has a method of rolling himself off the couch without too much assistance, he scoots on his butt all around the house and likes to race us everywhere.  It is amazing, how determined he is.  And his new and increasing independence makes him SO HAPPY!   

The weather was so beautiful today.  A perfect Fall day.  Unfortunately, we spent the majority of the morning at the dentist for Ty.  He has the beginning stages of cavities in several places.  I was told this would happen a long time ago because of his treatment.  He actually isn't allowed to brush his teeth with anything but a very soft toothbrush (raking up the bacteria in his mouth too aggressively can make him sick when his counts are low, and his gums can bleed too much if his platelets are low).  Poor nutrion also contributes to weak teeth.  And, the lollipop diet doesn't help, either.  I have a new plan in place to try and prevent further damage, but it will mean more work for me (another daily supplement and some additional cleaning using a finger brush and a special order toothpaste).  We stopped by Ty's Nana's house afterward as a reward for being such a good boy at his very first dentist appointment.  He was so scared, but he really did well. 

We made candy apples the other day (not the best transition after discussing the dentist, but it's true), and tomorrow I am going to take Ty and Gavin to the park or something fun outdoors so we can collect leaves (like Ruby on "Max and Ruby" - Ty's favorite TV show).  I just love this weather.  I want Ty to have the chance to experience so much of what he missed over the last year.  I pray this is only the beginning.   Please continue to believe in his miracle :)

With love from Ty and the rest of the Campbell's.


Monday, October 3, 2011

Remembering four years ago

Ty's fourth birthday is tomorrow.  On this night just four years ago, I had no idea the love I was about to experience.  I mean, how do you explain colors to a person who has never been able to see?   There is a scene in the movie "Mask" where the main character uses a handful of fragrant moss to describe green, something cold to describe blue, cotton balls to describe white, billowy clouds.  I don't think I can come up with a way to describe the pure explosion of love that was bestowed upon me the minute Ty was born, but I imagine anyone with children knows what I mean.  Never before had I felt something so powerful. 

Then there was also the gnawing fear that results from being buried under a mountain of new responsibility. Why did God think I would be able to take care of this baby?? I can't even find my glasses or my car keys?

Of course, I love Gavin just as much... but he wasn't my first experience at becoming a mom.  I knew what I was going to feel, so it wasn't the same inexpicable sense of pure amazement over the miracle of life.  He came with his own slew of first experiences and life lessons, though - like how to go food shopping with two under two :).

My children are my greatest blessings.  I am the luckiest woman alive and I pray for Ty's continued improvement.  I would be absolutely lost without him, and I know with every ounce of my being that I would never ever recover. 

After Ty fell asleep tonight, I laid next to him while I was giving him his nightly dose of chemo and I just stared and stared at those lips of his.  I do this all the time, but tonight I was flooded with thoughts of how those lips have always been my favorite feature since the day he was born.  I kiss him on that soft, heart shaped pucker all the time when he is sleeping and of course tonight was no exception.  I probably overdid it, but I am just so grateful that he is here.  We have had such an incredible August and September that I have to engage in these kinds of tangible acts to remind myself that it's real!  That he is really sleeping and inhaling/exhaling in a light, healthy rhythm. That his face is no longer swollen from steroids.  That his hair is all grown in on top.  That he was able to pull his own little hand up to his own little cheek.  My baby is a four year old boy!!!  Where did the time go?  We were robbed of one year of his life, but I am honestly grateful for all we have been through.  I can't say that I wouldn't change a thing (of course my Mama Bear instincts would take away all the pain he has been through if I could) but since what happened has happened, I can only embrace all of the good, wonderful things that have come to fruition as a result including my own enlightenment.  And, of course, beg and plead and pray that my precious gift continues to improve until he is returned to his optimal health. 

Happy birthday baby boy.  I love you infinity. 


Last year we celebrated Ty's third birthday just three days before his first round of high-dose chemotherapy began.  It was our first time at Memorial Sloan Kettering Cancer Center since we decided to switch care (Ty's original tumor resection and resulting stay in the PICU was at Cohen's Children's Hospital in Long Island).  We were blissfully unaware of just how much time we would be spending at MSKCC.  How soon it was to become our home away from home.  A big huge thank you for all of his incredible doctors and nurses who have given him the best care imaginable - despite all of the curveballs. 

Today, Ty's physical therapist dropped off a walker for him, and what a nice birthday surprise that turned out to be!  It's very cumbersome and he still has to get used to it before we will use it much outside of the house, but it allows him to chase his brother around the house and mobilize independently for the first time in months.  It's so great to hear him laugh while he "runs" around the house.  I will be sure to post a video soon. 

Thank you all for your continued love and support - and all of your wonderful birthday wishes!  This journey would be a very sad and lonely one without all of you cheering us on.  We love you so much and we are grateful for all of your thoughts and prayers.  We will be sure to share pictures of the birthday king tomorrow!  He will be bringing in some brownies to preschool to share with his classmates.  I can't wait :)

A fitting quote to kick off the week



Saturday, October 1, 2011

Birthday Blessings

Today is my birthday.  When I was pregnant with Ty, my due date was supposed to be October 1st and I remember how much I hoped that he wouldn't be born on that day so I wouldn't have to "share" my big day (and my cake).  He was born on October 4th, and I was pleased.  Today, we celebrated Ty's birthday instead of mine because it is Saturday and it made the most sense to invite all of our family over for a weekend party.  Naturally, I could care less!  I had the best day ever celebrating Ty.  I can't believe he is here with us and getting so strong.  It is a dream come true and the best birthday gift ever.  He can have my birthday every year, there is no better gift than him.  Here he is with his cake, my beautiful, big, almost-four-year-old. 


Knowing that I would be crazy with Ty's party this weekend, Lou surprised me on Thursday afternoon and took me to the mall for a looooooooong overdue shopping bonanza.  I got some very necessary shoes and Fall sweaters and it felt so good to buy something pretty for me, me, me!  The funny thing is, though, we couldn't resist stopping into a children's store for Ty and Gavin during our very small window of opportunity.   I have never purchased anything from the American Eagle store "77 kids" before, so maybe this bag thing is nothing new... but me and Lou both teared up a bit when the clerk behind the counter wrote this out.  I don't think this was a coincidence.  She has no idea just how appropriate it is.


Thank you, Lou, for forcing me to get out and buy myself some new things.  I also want to thank my Pawling peeps for taking me out to dinner last night.  Ladies!  It was a very nice way for me to celebrate my birthday.  Thank you so much for such a nice night. 

Today Ty had his cousins over for a fun-filled day and I enjoyed being surrounded by family.  I love everyone so much, and watching Ty playing with his cousins was so cute.  We had a lot of fun with his new toys like his "science kit" and "creepy crawlers" lab.  We did loads of arts and crafts today.  We had a pinata that was broken open by a swift whack from his blindfolded Grandma after all the kids had a turn (how funny is that?) and I let Ty spray the whole room with blue Silly String after all of the candy was retrieved.  He laughed in hysterics when we did that.  In fact, he laughed all day long.  What a great day.  He and Gavin had so much fun, they couldn't sleep tonight.  They were just too wired, and I didn't care about keeping them up late.  In fact, Ty is asleep in Lou's arms right now (11:30PM) because he refused to go up to bed while the Yankee game was on.  He is a fan for life :) 

As I post new photos, you may notice that Ty and Gavin are both sporting haircuts.  Yesterday they both had a trim and they look so handsome.  Unfortunately, I couldn't get any good pictures!  In the meantime, here is a fun shot of Ty with Lou until I have something better to share of the boys together with their new 'do's. 


Thank you for all of the amazing birthday wishes I received.  I am the luckiest person in the world.  I feel so blessed, thank you.  Goodnight all!  XOXO.