Thursday, June 30, 2011

A simple procedure, just like we were hoping for

In fact, it turned out to be an even easier surgery than we expected this morning. Ty slept well last night, despite the fact that they woke us up every hour on the hour to shine a light in his eyes and take his blood pressure. He woke up surprisingly cheery. His eyes were still terribly crossed, but he was so cute with his doctor. when he was leaving the room today Ty said, "Hey Doc! See ya way-ta.". In fact, he was in such good spirits while being rolled off to the OR, he didn't even require any anti-anxiety meeds in advance. He just kissed Lou and I goodbye with a smile while our hearts were in our stomachs.

Ty returned two hours later without a new shunt. That's right. When they opened him up in his belly to check the tubing, whatever debris had collected inside cleared itself and it began flowing perfectly. To be on the safe side, they also opened him up on top of his head to check the function of the valve and it was working perfect. The neurosurgeon felt he shouldn't replace the hardware since it was now working at 100 percent. I am happy about his decision, but so upset that he has another two huge incisions that will take a long time to heal. My biggest concern is that we are missing something, but the imaging was otherwise clear and Ty's eyes are already drastically improved which gives us much relief.

It's so incredibly frustrating and exhausting, but of course we are so happy that all is well with our little fighter. Now we just need to get him off of the angry medicine so he stops barking rude demands all day and all night. He is driving us crazy right now because he is so unhappy being confined to his hospital bed again. He won't give us a minute's peace. He should be weaned by Monday or Tuesday.

We are so looking forward to a nice fourth of July weekend at home with the family. Please let this be the last speed bump we are faced with for a while. We may begin a three week course of radiation therapy as early as next week, but those details haven't been finalized yet so we will keep you posted. In the meantime, we expect to be discharged tomorrow morning and we are counting the minutes.

Superty does it again! He is our champ!

Wednesday, June 29, 2011

The Shunt. Again.

"Arent you glad it's the shunt and not tumor related?" joked the neurosurgeon. Of course, but come on already!!!!

The MRI following Ty's surgery last week showed that his ventricles were larger - an indication of hydrocephalus that we are all too familiar with. We were told that it was most likely caused by debris from surgery interrupting the CSF flow. Our doc pushed hard on the shunt valve to flush the tubing several times and that seemed to do the trick. Unfortunately, i guess it was a temporary fix. Yesterday Ty's eyes began to deviate toward the middle. By this morning he was completely cross eyed and keeping his eyes closed most of the time for comfort. We made our way to the hospital and it turns out that "cranial nerve six bilateral palsy" is a very common indicator of increased intracranial pressure and shunt malfunction. Ty just never experienced it before so we had no idea what was going on.

None of Ty's doctors are worried, they all seem to think this is pretty routine and Ty will be perfectly fine after yet another shunt revision. Lou and I are totally paranoid and edgy. Our poor baby just can't ever catch a break! And we can't ever catch our breath. Then we remind each other that it's because he will catch the biggest break of all and beat this in the end.

So... Unexpected surgery tomorrow morning. Not very complicated, we are hoping that the neurosurgeon can fix the shunt by replacing the tubing alone, rather than the entire shunt. We'll see. Hopefully we will be home on Friday. Fingers crossed for that, especially knowing that if we run into the holiday weekend it will get even harder to get discharged on a skeleton staff and we will really be stuck here.

When I left the house today, Lou asked me several times, "are you sure you don't want to bring the overnight bag?". I insisted no, because I thought I would jinx it if I brought a bag. Of course, now I'm stuck buying pj's and deodorant in the gift shop downstairs. It's really my own fault. Lou has my permission to say, "I told you so" as many times as he wants. Well, let me revise that and say up to ten times.

In the meantime, we are getting ready for another night in the hospital. Ty fell asleep a little while ago but before he did he kept saying, "let's get outta here!" over and over again. All i know is I hate this even more than he does. He thought he was going to the toy store during the whole car ride in. When we got to the hospital, he just changed his tune and talked about going to the candy store instead because he did so "gwate (great)" getting his "bwud-werk (blood work)" done. I hate that he is going to wake up here again. I hate that I have to see him off to the OR again tomorrow morning. I wonder what goes through his head at this point. He's been to the OR more than any person should have to in their entire life and he doesn't know if he is going to wake up okay or if he will be on a ventilator with a hundred stitches on his skull. I probably won't sleep a wink tonight knowing how poor Ty will be so nervous in the morning. Actually, knowing Superty he will just grin and bear it as usual while I walk away sobbing. He is seriously so tough.

Please cross your fingers for a simple procedure tomorrow, a quick recovery, and a visible difference in Ty's vision immediately following the surgery. Thank you for your continued love and support. With love from Ty and all of the Campbell's.

Tuesday, June 28, 2011

We're having our ups and downs

I should be in bed.  These steroids are just so awful.  Poor Ty was so miserable all day today.  Not at all due to pain or nausea so no worries - (phew!) - but OMG his mood!  I think I mentioned a long time ago that he used to call the steroids his "angry medicine" when he was on a regular dose of three milligrams a day back in December/January.  He used to yell as I was coming with the bottle "please don't give me the angry medicine!"  Today we just weened him from 12 milligrams a day to eight milligrams.  So, you can imagine what this is doing to him.  On the bright side, he has a ferocious appetite. He ate 11 slices of bacon, four slices of turkey, almost a dozen lollipops, three cups of blueberries, chippies (potato chips), animal crackers and pretzels.  I'm excited about that. 

Last night Ty only slept about four hours in total.  He was up at 6AM and didn't even nap once all day.  He was so tired he was actually closing his eyes while he was eating.  He went to bed around 7:30 and I can't believe I didn't climb right in.  I am going to regret it.

How predictable.  This post was just interrupted by Ty waking up (as suspected) and yelling at me that he wants his french fries.  I should have enjoyed the opportunity to sleep while I had it.  I will have to cut this short before I go get Ty out of bed and turn on Max and Ruby or some other cartoon.  Oh well.  It's gonna be a long night.

Before I go, I want to share some news about the great time we had last night with all of Ty's grandparents.  It was Nana's birthday (Lou's mom) and we had everyone over for cake.  Papa baked Nana a butter cake with chocolate icing and Ty picked out a cheesecake.  Ty also picked out the most adorable card.  When we got to the store, I was in the birthday card aisle and told Ty he could pick out Nana's card.  All of a sudden his eyes lit up and he pointed out, "THAT ONE!"  I kept pointing to all different, age appropriate cards that I thought he might be pointing to, until I realized that he was pointing to a card with IronMan, SpiderMan, Hulk and Wolverine on the cover.  "Happy Fourth Birthday" it read.  That was the card we got for Nana.  Last year he did something equally adorable.  He spotted a card with a huge banana on the front cover and said "NANA!  We should get that one!"  We love you Nana, and hope you enjoyed your birthday. 


NANA AND PAPA, LOU'S PARENTS
 My parents stayed overnight and my mom is staying until Thursday.  I am so happy to have them here because I don't know how I would have made it through today without otherwise pulling my hair out.  Thanks Mom and Dad!  I love you both so much. 

Having them here also allowed me to have our great friend Liz over to color my hair and cut Gavin's hair again!  Gavin's haircut makes him look like such a big boy, I expect him to say something like, "hello mother, how are you doing this evening?"  I don't have any pictures of his new hair yet, but here is a picture from the other day of him with his long hair sportin' a 'tude.  This picture is just so Gavin.  I need to get used to him with his big boy 'do. 


Of course, I can't post a picture of Gavin without sharing one of SuperTy, so here is a recent picture of our super hero in training.  He's being shy for the camera :)


We love you all and thank you for following us on this incredible journey.  Hugs and Kisses from Ty and Gavin. 

Monday, June 27, 2011

I love you more

Ty has been SO SWEET!  He told me "I wub you" about 100 times yesterday, and I'm not exagerrating.  He must be feeling a little vulnerable because he's been so mushy, and I am just loving every second of it.  What a gift yesterday was, and this morning too!  He just puts his arms out to hug me all day long, and I'm getting non-stop kisses.  Literally, hundreds of kisses.  Never in his life have I seen him so mushy.  It is the sweetest thing in the world.  He is smothering Lou, too, and even Gavin.  Every time he tells me he loves me, I answer "I love you more".  Sometimes he says "No, I wub YOU more," and I answer "I love you the most!" 

He sat outside in a lounge chair for almost 1/2 hour yesterday, which was the most he has ever allowed me to be outside in the yard.  He is apprehensive about that because he is physically limited, but he is getting stronger and taking baby steps toward getting out more.  Lou and I also took him for a long walk in the stroller on Saturday.  He fought us tooth and nail, but once we convinced him it was really great for all of us to get out and for me to stretch my legs.  I otherwise live on this darn couch! 

Yesterday one of my dearest friends since the 7th grade came to visit for the day.  Thank you NANCY!  She drove two hours from Massachussets and brought delicious lunch and dinner.  I can't tell you what a difference it makes to spend time with friends just talking away about every day things.  I know I mention this a lot, but sometimes I worry that people think it is rude to tell me about trivial things, when it is just the opposite.  I like to hear about everyone's normal, everyday life.  And to talk about funny things. 

Today we have to get some bloodwork done locally, and Ty wants to "run errands" with me.  My mom and dad are coming to visit for a few days and I can't wait to see them (and take advantage of their help while they are here :)  Love to you all. 

Saturday, June 25, 2011

Thinking of you

On Monday, a very special girl will finally be leaving the Pediatric ICU at Weill Cornell NYP, after what I think was more than six weeks this time around.  We were lucky enough to share a room with her following both of Ty's major surgeries, and she and her family are simply beautiful.  Kyra.  A beautiful name for a beautiful young girl. 

I fully respect her privacy and there's really no need to share details, but I can't help but think of her often because I keep hearing her voice.  The last time we shared a room, she was also recovering from a major surgery and remained intubated until just before we were discharged so I don't recall hearing her voice at all.  This time around, she was talking up a storm about Justin Bieber to some of the others at the hospital and she sounded so adorable.  Pure sweetness.  I got to see her sitting up with her hair pulled back and I wish I told her how beautiful I think she is.  Life is so f-ing unfair, and like so many of these kids, she is an inspiration.  God bless her and her family.  May there be medical advances and research that will help all of our children who are afflicted with unfair illnesses. 

Ty is doing so well.  He is still very apprehensive about being home and it's as if he's afraid is only temporary (and who can blame him considering all he has been through), but he showered us with a lot of jokes and smiles today despite his moments of melancholy.  Physically, he is still getting stronger despite the steroids he is on.  He ate some pretzels today and drank apple juice.  He should be weened from the steroids by the end of the week, which I'm so happy about because I can already see it in his face... and don't get me started about what it does to his mood!  Regardless, after all Ty has been through he just continues to prove that he is a superstar.  Thank you so much, everyone, for your unwavering love and support.  He will beat this cancer up!!!


XOXOXOXOXO, love Ty

Friday, June 24, 2011

A bit distressed

Discharge was a circus today. We didn't actually walk through the door at home until around 8:30PM and I immediately had to get Ty's meds ready. Then I had to clean out the refrigerator of all the rotting groceries that I purchased over a week ago but never got to eat - so sad!  One of my least favorite parts about returning home after a long stretch. 
Ty was very excited to get home, but it was so late and he was soo tired, he actually asked if he could just go straight to bed.  Within the last three or four hours he's been doing some strange neurological things, too, which has Lou and I feeling like our eyes are being held open with springs.  It's just so nerve racking to see him with tics like yawning weird every 30 seconds, or opening his eyes wider than usual.  We need to keep reminding ourselves that the MRI was clean yesterday (clean is such a beautiful word) and that we need to allow his brain to recover.  Ty's brain is doing a lot of moving around and readjusting, so we need to be patient. 

We just look at one another with such pain and anxiety.  The whole last week was so incredibly exhausting on so many levels, today was complete chaos, and we just needed to come home and let out a deep sigh.  That relief is being stolen from us as we watch Ty struggle to sleep.  It's just so hard sometimes.  I went upstairs and woke up Gavin for a few minutes just so I could hold him in his rocking chair.  That was the only real moment of peace I had all day.  Now I have to wait until at least 11:30 before I can give Ty his next dose of steroids, then I am going to sleep right next to him.  I pray the rest of the night is filled with peace and quiet.  I need to wake up for meds again around 4AM, but other than that I plan on sleeping as late as the boys will allow.  Goodnight everyone.  Sorry this wasn't a more cheerful post considering we are "home fwee!!" as Ty would say.  Tomorrow will be a better day :)

XOXOXOXOXOXOXOXOXO.  Have a great weekend.

Thursday, June 23, 2011

Much love to our nurses

Ty has been so depressed today, and I really can't blame him.  I think it's just a combination of the steroids, the withdrawal from the wealth of narcotics he was on when he was intubated, the constant chaos in the Pediatric ICU and the fact that we are sharing a room with two older teenagers.  Both of whom are incredible kids, so brave, but when he is away from other little guys his age I think he begins to feel more of an outsider.  Plus they are up so late at night, it's really taking a toll on Ty.  He should be in a room with other little kids who are tired by 8PM.  This really drives me crazy!!

The good news is… we are supposed to go home tomorrow.  In all of my experience, the minute we walk out the door of any hospital Ty's mood turns around.  It's a sure way to get a smile.  As are presents - and he received an amazing present at the hospital tonight.  It was so special and it was the only time all day I saw him perk up, even if only for a short while.   
I only wish he would have shown a little more enthusiasm when Tom stopped by tonight.  At Sloan Kettering, Ty has four primary nurses… Rae-Ann and Sue during the day, and Daniel and Tom at night.  That just means that they have "first dibs" on Ty if he is inpatient when they are working.  It's a wonderful system that I wish more hospitals would adopt because it has allowed us as a family to really get close to Ty's nurses.  We learn so much from them and we really love them.  Plus, they totally watch out for our interests on so many levels and they help us to be better advocates for Ty.  The relationship goes both ways, too.  Sue told me that she was approached by a parishioner at her church up in Albany who asked if she ever saw a boy named Ty Campbell at Sloan because she had been following his blog.  "Are you kidding?"  Sue said.   "He's my love - he's mine!"  Then there was the time that Daniel stopped by the hospital on his DAY OFF to bring Ty a DVD on firetrucks.  Oh, and the reason he was off work was because his wife had just given birth to their second baby a couple weeks earlier.  Rae Ann stops by the clinic to say hello whenever she can, and Tom ALWAYS knows where we are and makes every effort to stop in before or after work if we are off the floor.  In fact, he was randomly wearing a "Ty" tee the night we ended up in Urgent Care… that's how connected he is J   I wish Ty gave him a shit-eating grin and a hug around the neck instead of a furrowed brow with silent treatment, but Tom totally understands.  It doesn't stop him from checking in on us.  THANK YOU ALL FOR BEING SO GOOD TO US!!  I just have to share this clip from a Johnson and Johnson commercial featuring our Tom that I just found out about.  I'm so proud of him.  Everything he is in this commercial is exactly who he is when caring for our Ty.

Not only are the nurses the best, but we have some great volunteers who come in to play bingo and make slime with the kids, the candy cart on Fridays, even the cleaning crew and the guys in the parking garage have become like family.  We have spent way to much time here, but we are grateful for all of the wonderful people who make our day to day encounters that much easier. 

Home tomorrow will be a dream.  I am about to pour a glass of wine from my stashed bottle so I can fall asleep at some point tonight among the noise.  It's so bad, I wish I had something stronger to fall back on but it's better than nothing.  Just kidding, sort of.  The truth is, Ty wakes up so often that if I ever dare to take something like a Tylenol PM, it would likely be a disaster because that would be the night I get only two hours sleep or something. 

I miss Gavin so much.  Speaking of Gavin, just look at this adorable face.  He is such a character, I can't wait to squeeze him tomorrow. 

Wednesday, June 22, 2011

Seeing is Believing

I wish I had my video camera with me, because you wouldn't otherwise believe how amazing Ty is doing today.  His MRI was performed this morning at around 9AM (everything is always late).  He was brought back to the room and easily extubated soon after. 


The MRI showed that all of the visible cancer has been removed, and that he is recovering surprisingly well.  There is a sinus membrane where one of the tumors was arising from that is a concern because it is a sensitive area to work with.  The surgeon removed all of the visible cancer by scraping at the membrane, but he had to be cautious due to the chance of fatal bleeding.  He is concerned about an aggressive recurrence in that area, so we are exploring our options with focal radiation at Sloan Kettering.  We feel there is a benefit knowing that the new chemo (the Temodar) is also at work… swimming away in this body… so I like to visualize that killing any microscopic disease left over or at least keeping it at bay until we can zap it with radiation.  I want so badly to declare Ty cancer free.  I prayed so hard for a successful surgery.  That all cancer could be removed without causing him harm, and that it NEVER COMES BACK.  I know what I've been told, but I don't care.  I will never stop praying for that.  NEVER EVER EVER EVER EVER EVER EVER COME BACK!!

When Ty was lying in bed with the tube in this mouth earlier today, he was obviously unable to speak.  But, when Lou asked him "who's the best good boy in the world?" he mouthed the word "me!"  Despite the high dose steroids he is on, he is also showing tremendous strength in his arms and legs.  You should have seen him pulling at his arm restraints trying to bring his hands up to his face to feel what the heck was going on.  And the kicking!  I am excited to get him tapered off the steroids and home quickly so he can restart a physical therapy regimen to get him back on his feet.  I was thinking about that today, and even though he was standing and walking somewhat independently back in October (around Halloween), he never even had a chance to physically recover from the MRSA meningitis he suffered after his very first surgery so he hasn't actually been able to walk normally since August 20th, 2010.  My dream is to see him walking proud on his one year anniversary - and never looking back.   

Yesterday morning, Ty's pupils were dilated and unresponsive to light.  His eyes were crossed.  His heartrate was very low and his blood pressure high.  He was lethargic and shaky.  His coordination was so off he couldn't slap me five, clap his hands, or play with his toys.   Today he has no problems clapping whatsoever.  He is sitting with an ipad on his lap navigating his TV shows.  He is speaking perfectly well and all of his vitals are almost perfect.  I'm telling you, you would not believe he underwent such a major surgery just yesterday.  The brain is so amazing how it can bounce back like this.  He looks amazing.  That's why we call him SUPERTY - our little fighter!!

The incision on Ty's head is about 5 or 6 inches long and it is right smack on the back of his head.  Up and down from the neck, just like the last one which runs alongside his right ear.  He has several scars on the top of his head over an inch or two in length from all the shunt revisions, two large horizontal scars on his stomach, the scar on the other side that his G-tube will make, a two inch scar on his leg from a skin graft, a scar from his medi-port placement and a scar on the other shoulder from another small procedure.  Lou and I sometimes talk about how hard it might be for Ty, feeling like people stare in gym class or something, but lately I've been thinking the complete opposite.  I see Ty as a healthy teenager who is proud to show his scars and talk about what happened with him.  I think he would proudly shave his head in honor of the pediatric cancer cause to show other kids that they can get through it and he won't have any fear about the potential of going bald as he gets older.  He will embrace it as more opportunity to talk about the cause.  I pray that he has that chance.  The chance to be the incredible person I know he will be. 

I am just so ecstatic.  Ty may even be able to go home as early as Friday, but we need to wait for the results from another CT scan tomorrow.  His ventricles looked enlarged in the MRI so they dialed down his shunt and we need to make sure that's working.  If not, well, let's not even think about that right now :) If I can get out of here and back home to Gavin by this weekend I will be the happiest mommy in the whole world.  If I have to stick it out until early next week, I can handle it, as long as my hospital neighbors don't mind my scraggly appearance for a few more days because I am showering in that hellhole as little as possible while I'm here. 

Love you all so much.  Thank you for loving Ty.    

Tuesday, June 21, 2011

Success

Ty's surgery today was a success.  It was long, but his surgeon said he thinks he was able to remove both tumors in entirety.  He remains intubated tonight, but only because he is scheduled for an MRI at 7:30 tomorrow morning.  He will be extubated immediately following that, and we can't wait to see him bounce back. 

In the meantime, I am going to stay at the Ronald McDonald house tonight since I can't get into bed with him and he is going to be sedated throughout the night.  Lou is camping out on the makeshift bed in the PICU just to be here in case something should happen overnight. 

I don't have the energy to get into the details tonight, but I will be sure to post more information tomorrow.  All of our love... Ty and the rest of the Campbell family.

Monday, June 20, 2011

Pre-surgery stress

I can't even believe we are here again.  Awaiting Ty's third major tumor resection.  If it wasn't all in his brain, maybe it wouldn't be so scary, but really… how many times can we choose to open up my poor baby boy's skull?  This has been such a difficult decision and we are completely terrified, but we are also so hopeful. 

Before going to sleep on the eve of surgery, my mind is absolutely racing.  But my thoughts are so intense and so scattered that I can't even organize them in order to put them down on cyber-paper.  Instead, I can some of our most intense feelings in simple terms... 

Lou and I are more scared of Ty losing his speech, motor skills or other brain damage than we are of losing our precious baby in surgery. The whole reason why we opted to do this is to make things better for him and we fear the regrets we will face if it doesn't go well.  As a result, our anxiety level is at an all-time high, and we are having a hard time keeping ourselves in check.  Today has been a tough day with Ty, which makes us so sad in case, God forbid, things don't go smoothly.  We want to treasure every minute with Ty, but today he really didn't allow us that.  He was either sleeping or miserable all day.  And by miserable, I mean unbearable.  The steroids make him so angry, it is impossible to calm him down at times and that is just not Ty.  He is not feeling or acting like himself and that makes us so sad. 

Considering what we are faced with tomorrow, we managed to have a relatively normal day today.  We were visited by family and friends.  We ate (so stop worrying).  We did laundry (in fact, I even stepped out to buy a new outfit so I could wash the one I've been living in).  And this evening, Lou and I left the sleeping Tyrant in my mom's care so we could grab some well-deserved sushi and beers!  It felt a little wrong to leave, but without those spontaneous moments of solace Lou and I would surely fall apart. 

Now I am going to crawl into bed next to Ty and close my eyes.  Don't be jealous, but look at what I get to snuggle up with right now :)  I hope I don't bother him with all of the kisses I will be placing all over his head and I hope I can find a way to actually get some sleep in the midst of all this chaos (the internal and external chaos that surrounds me).   Surgery tomorrow won't begin until about noon and it will go for at least six hours.  We promise to keep you updated as often as possible.  Thank you so much for your continued love and support.  XOXO, with love from the Campbell's.


By the way, just a quick side note.  After five shunt revisions, Ty's scans show that his ventricles are back to normal in his brain.  So much for the unexplained chronic hydrocephalus that kept Ty on morphine for six months.  The new shunt is finally a huge success! 

Next steps for Ty and a tribute to Lou on Father's Day

Update on Ty - our little fighter
We decided to opt for another major surgery.  Some of the doctors here think we are crazy, but our neurosurgeon is the most vested in Ty and he said he wants to do it.  If it was his child, he would do it.  What more can we ask for than that. 

The others don't think we're crazy because of the surgery risks - this time it actually won't be as dangerous and heroic as last time.  It's just that when a cancer like Ty's metastasizes, there isn't an oncologist in this hospital who will tell us it can be cured.  Point being, if we subject Ty to this surgery, we can only expect for another tumor to appear either at this tumor site or a new one.  Lou and I understand that yes, the chances for a cure are slim to none.  Like getting hit by lighting.  But you know what?  People do get hit by lightening. It happens.  And if there is a way that we can stay in this fight without hurting Ty much more than he is already suffering, then we are all for it. 

I learned today that when a tumor metastasizes, the cancer "seeds" itself throughout the body and additional tumors begin popping up all over.  However, these tumors - referred to as "mets" - aren't the same as the original because they are more isolated.  So, Ty's original tumor came from his clivis (skull bone) and infiltrated his brain stem.  It became part of the bone and part of the brain stem, making removal very risky.  The mets are more like large golf balls that are not actually part of his Cerebellum, but they are growing and pushing all of his brain tissue into his brain stem and other critical areas of the brain that are causing him to suffer so many neurological deficits.  Because of the nature of these tumors, Ty's neurosurgeon believes he can remove both Cerebellum tumors intact, without much disruption to his brain tissue.  Of course, it means another huge, Frankenstein incision at the back of his skull and he will be intubated for a day or two after surgery.  And, as with any surgery there are risks.  This time, the risks include interruption to a major vein, but Ty's surgeon is very skilled in working around this crucial piece of the anatomy.  The other risk, although the chances are minor, is something called mutation to the posterior fossa.  This means that Ty could possibly lose his ability to speak and his body would be completely limp for an undetermined period of time.  It usually improves gradually, but it could take a long time and Ty's time is way too precious so that is one of the side effects making us very nervous.  Luckily, the surgeon and the oncologist feel that the likelihood of this happening is quite low. 

For Lou - The best father and husband EVER
Lou, what would we do without you.  You are the most loving father and husband, we are so lucky to have you.  I only hope that Ty and Gavin grow up to be just like you.

We have been facing something that no Dad should ever have to face, yet you never waver.  When you ask Ty for a kiss, no matter how bad he is feeling, he reaches out his arms to grab your face and pull you in.  I will always cherish that and it brings tears to my eyes almost every time I see it. 

I love that you are always trying to keep us smiling and that you have put a lot of pressure on yourself to do so much for Ty - I don't know how you do it.  You have participated in triathalons for Ty, you created his foundation, you often leave the hospital at 5 in the morning to go to work 2 hours away, only to return late that night.  You cherish every moment with your children.  Everyone who knows you, loves you.  You have a wonderful, loving family and great friends which says so much for your character.  You are the best father in the world and I love you infinity.  We all do.  XOXOXOXOXOXOXOXOXO, Happy Father's Day.

I also want to wish Papa and Pop-Pop a Happy Father's Day.  We wouldn't be able to do this if you didn't teach us how.  Thank you for being the best Dads in the whole world, and for being the greatest grandparents to Ty and Gavin.  We love you both so very much and we are so grateful for the lifetime of love you've given us. 

Lastly, to all the Dad's who read this blog... thank you and Happy Father's Day.  

MY VIDEO TRIBUTE TO LOU

Sunday, June 19, 2011

Keep fighting

Can we?  My childhood friend who I love with all my heart recently drove 6 hours with her toddler to visit with me.  She and her husband are simply the best.  She gave me a bracelet that is engraved "Keep Fighting."  I cried when I opened it because it reminded me that this is my fight too.  And Lou's fight.  We are making so many difficult decisions for Ty including whether or not we should give up.  I caught a glimmer of the inscription today while I was feeling very vulnerable and it helped me.  Keep fighting.  I hope we can.

We will be meeting with Ty's neurosurgeon tomorrow at 9AM to find out what, if any, our options are.  He reviewed Ty's MRI results and told us that he believes that what appears in his Cerebellum is mostly tumor mass, with some bleeding captured inside.  The Cisplatin simply didn't work.  It's so hard to believe, too, because Ty's best weeks in 6 months were while he was on that medicine.  I guess it just didn't knock him down hard enough. His doctors explained that it came on so suddenly because the brain has an amazing way of compensating for any deficits, until finally it is forced to succumb to the issue.  Ty's brain was surprisingly good at finding ways to continue functioning normally, even when the tumor was growing five times in size.  Then it all came tumbling down on us in a matter of hours. By the time we were settled into a room last night, Ty was completely compromised.  Unable to speak, barely able to breathe, severely agitated and unable to control his own arm and leg movements.  I was dying inside because I simply couldn't understand what he wanted and I felt so useless.  He kept reaching for me, crying to me, hitting me, screaming in my ears and pushing me but I just couldn't figure out what to do to help him calm down.  To comfort him.  That is the worst feeling in the world... to feel so useless when you want so desperately to help.

My love/hate relationship with steroids continues.  They saved his life again last night.  His breathing was finally under control around 5 or 6AM, thank God.  If the swelling in his brain wasn't reduced, we were told he would end up on a ventilator because his muscles would eventually be too weak to keep breathing at such a heavy rate.  His speech also improved (although it is still difficult to understand him, we are communicating again).  In fact, today he was in his bed hysterical laughing over bubbles and singing Spider Man songs.  I don't know how he does it, but he always manages to keep his spirits up.  It certainly helps that our entire family was here visiting, taking turns entertaining him in every silly way imaginable.  Ty is just so loved.  Even the people at the hospital are in love.  Everyone remembers him, even when I have no idea who they are I hear "Hi Ty's Mommy!  How's Ty?" 

The steroids brought back his appetite for the first time in months, but we are taking it slow and only allowing milk and juice until we're more confident in his swallowing.  So, for a kid that hasn't had a single thing to drink with the exception of a few sips of water four days ago, the three cartons of milk and four juiceboxes  he drank today are pretty impressive!  And the night is still young.  I don't see any sleep in our future with the way he is behaving.  At least I feel like a normal mom to a normal three year old right now because he is driving me totally nuts!  All I want to do is snuggle him all up and sleep with him nuzzled next to me, but the steroids have turned him into a crazy and demanding little boy who sleeps in fifteen minute intervals and wakes up cranky.   

Ty before bedtime tonight.  Not that there will be any sleeping going on.  He's gonna party all nite:)
Are you there, God?
I had a moment of panic this morning.  The only thing I could think of doing was running to the church across the street.  I must have looked totally crazy in my pajama top and unbrushed hair, out of breath with tears streaming down my face. 

I was thinking about when Ty was first diagnosed... I took the boys for a walk around my neighborhood in Long Beach (where I lived at the time).  Of course, they fell asleep and my feet led me to our local church by the ocean.  When I stepped inside the quiet, still darkness felt so calming.  It was cool and damp and I felt my head clear for the first time in days.  I lit a candle, I prayed, I cried, and afterward I felt so much better.  I wasn't given any answers but I was somehow able to stop contemplating the why and I left there feeling closer to God. I was able to accept and move forward. 

Lou just recently took me to the church that I ran off to this morning.  It is so beautiful inside, but the last time I was there I remember feeling empty and alone.  I actually looked around the church searching high and low, quietly asking "are You here?"  During this painful journey, we have faced blow after blow after blow.  Somehow, I haven't yet gotten angry at God, but I'm afraid that day will come if things don't work out the way I need them to work out.  If we end up losing Ty.  Then every time I start to feel betrayed, I look at my babies and I am humbled.  I am beyond grateful.  I hope I can hold onto this always, no matter where this life takes me. 

Today I just needed to find some solace at church, for my own sanity.  I was running there hoping to find comfort and when I arrived I was surprisingly approached by a priest immediately.  That never happened to me before and I fell into hysterics.  As soon as he sat down in the pew next to me I hugged him and cried out, "I'm so glad you're here!"  It wasn't something I would normally do, but Father Jordan was so kind and caring.  He brought me into his office and provided me guidance.  The only thing that haunts me is his response to the way I am clinging onto hope, and the way I continue to beg for a miracle.  When I asked him what I need to do to help Ty be chosen, he simply advised me to continue being his mother and to walk him to the gates of heaven. Believe me, I know he meant well.  I am not upset with that advice.  But I am not ready to accept it yet, either.   And if I'm walking my son to the gates, I don't think I can just send him off alone, turn around and return without him.  I would want to go with him.  Gavin is the only thing that keeps me here in that scenario. 

Before Ty got sick, I would stare at him sleeping and think about how lucky I am.  How I could NEVER IMAGINE anything bad happening to him.  I would never be able to deal with something like that.  No way.  Thank God my family was healthy and happy, because I just couldn't imagine. 

There's no doubt that I have learned so much from this experience and I am forever changed.  But, I was better prepared mentally to accept losing my son in December when we first went home on hospice care than I am now.  Now I am frantic, holding onto any glimmer of hope with every tiny piece of my existence. I asked Father Jordan his opinion on why God would save him at that time, with what was truly a miraculous healing in my opinion, only to have him continue suffering for months and months if he isn't meant to be cured?  He said perhaps there was more for me and Lou to learn.  I don't know about that.  I just don't get it.  The only answer I can think of that makes any sense is that Ty has been brought to this place, facing yet another impossible hurdle, so he can continue to amaze people with his strength and prove that miracles to happen.  Don't you think so?  I don't care if I look like a fool.  You can read this and feel sorry for me because I am unrealistic, but I don't want to lose hope and I don't want to cry anymore. Not unless all hope is lost - and at least for tonight, that is not the case.

Before I left the church, I said a prayer.  I asked for today's MRI to at least provide us with options.  From the text messages we received tonight, it sounds like that's exactly what we will be discussing tomorrow morning.  Options.  Please join me in praying that Lou and I are able to weigh the options and make the right decision for our baby boy.

Saturday, June 18, 2011

I am in hell

We left for the hospital shortly after my last post.  Ty's breathing was becoming so labored and he was so congested that we got very worried.  I didn't want to spend another night wondering if he needed to go to the ER, so we left around 5PM with the hopes that he could receive a chest x-ray and some medications and we could return home tonight.

During the car ride, I squished myself between the two car seats so I could be closer to Ty.  He was so uncomfortable he kept asking me to snuggle him in his scraggly, fading voice.  I would try to get myself in the most awkward, twisted position to snuggle him but it just didn't help.  He got worse and worse as we were driving into the city, as did the traffic.  It took us twice as long as usual to get here.  There were severe thunderstorms and flooding on some of the roads, it was a disaster.  When we walked into Urgent Care at Sloan Kettering, Ty was completely pale and the skin under his eyes was very red.  The cheery nurse came up to us with the blood pressure machine saying "so, what brings you guys here."  Before we could even answer, she had us whisked off into a room, and about 15 people followed her.  I thought everyone was overreacting at first.   The crash cart was brought in and it was like a punch in the face when I saw the defibrillator that is used to "jump-start" the heart.  An oxygen mask was thrown on him, his shirt was pulled off, his mediport needle was pulled out in order to put in two larger ones to accommodate the emergency needs.  In fact, the nurse was so frantic he ripped out the needle without carefully removing the steri-strips that was holding it in place, tearing a huge gash into the skin under his arm that requires a stitch.  During all of this, Ty pulled the mask down to tell me that he didn't even cry when the needles went in.  It was hard to understand, but I knew what he was trying to say by the proud look on his face.   We have since been here for hours on end.  Right now, we are waiting for an ambulance to take us to the Pediatric ICU across the street at Cornell NY Presbyterian Hospital.  Ty is not well, but he is such a fighter it's unbelievable.  He hasn't slept this entire time, he just keeps tossing and turning and trying to pull the leeds off, and the blood pressure cuff, and the pulse-ox.  It's really amazing how his spirit just doesn't give up. 

As he lays in bed trying so hard to tell me what he wants, I can't help but break down over and over again.  Lou and I are taking turns crying.  I'm the Mommy!  All I want to do is give him what he wants, to hug him and make him feel better.  But tonight, nothing I do is what he wants.  He just wants to not be here.  He wants everyone to go away.  He wants to snuggle his mom and dad in his own bed at home.  He wants to be cured of this horrible thing called cancer. I want that, too, baby boy.  So very much. 

Ty had an emergency CT scan tonight, and the imaging showed the lesion in his Cerebellum to be more than 5 centimeters.  It was less than 1 centimeter when we began the chemotherapy in May.  All we know right now is either the tumor has broken through the chemo and grown five times in size over the last five weeks, or it had a bleed which created an enormous hemotoma in his brain.  Either way, it is absolutely horrifying.  I'm told if it is a bleed that it will not dissipate on it's own or be reabsorbed, that it would have to be surgically removed and it is not in an easy location for that.  If it is tumor, well, I don't think there are any other medical options to address that but I will keep on praying. 

All I know for sure is that I am in a place right now that is all too familiar.  I am in hell.  I'm watching my baby suffer, getting worse and worse before my eyes.  I am watching my husband suffer.  I am terrified of losing my baby boy.  And I am trying to stay focused on what happened every other time I was here in this place.  Ty defied the odds.  He kept fighting when everyone told him the game was over.  I keep looking over at him and waiting for him to come back to me and start talking again.  I'm counting on the MRI to show that it was swelling, and blood, and that yes, it is being reabsorbed by his body.  It won't require surgery after all!  He received a large dose of steroids again, which worked wonders the last time we were in a similar situation.  It's heartbreaking to think of him on steroids again for so many reasons, but if it will save his life we'll take it. 

I am not in denial.  I am very aware of the potential reality that is waiting for me.  But I will not lose hope, ever.  I will never give up on my baby boy and I will always do right by him.  Right now, I am doing right by him by keeping my faith and praying for a miracle.  Please do the same for Ty Louis Campbell - Our Little Fighter. 

Friday, June 17, 2011

To go or not to go

Lou and I left the hospital today feeling very good.  My sister came into the city to spend the morning with us and Ty was actually sent off with a clean bill of health so quickly that we were able to enjoy a nice breakfast at one of our favorite places. 

All of the neurological issues that had us so concerned didn't seem to scare Ty's doctors much.  In fact, his primary doctor raised a number of points about Ty's symptoms that show they are probably not even tumor related.  For example, Ty's weakness and lack of hand-eye coordination is bi-lateral (meaning, the weakness presents itself equally on both sides of his body).  The Cerebellum lesions are both on one side of the brain, and if the symptoms were related they would be present on only one side of his body.  After several neurological tests, we were also told that Ty isn't showing any signs of brain stem compression.  We knew that because we are sure that the radiation did the job and wiped out that cancer - but still it is SO refreshing to hear some confirmation from his doctors.  Ty's increasingly slurred speech and shakiness can be attributed to the Temodar.  We were told that this chemo really kicked his *ss, making him very weak and extremely fatigued as a result.  I was so concerned that Ty's symptoms appeared as if he were drunk (which is indicative of Cerabellum issues) - but those same symptoms can be because he is totally groggy and just wiped out overall.  The team agreed that that is what's going on with him.  What a tremendous relief!

I didn't know what to expect over the course of this 28-day cycle because Ty has never been on this medication, but I was told today that we can expect Ty to remain at his worst for another few days.  That the worst effects are usually seen within the week following the last dose - which was Monday.  So, we hope to see some gradual improvement mid-week next week.  Ty's bloodwork came back good, so he is not neutropenic and we don't have to keep him in a bubble.  He also gained another 2/10ths of a pound (2 weeks in a row!).  As you can probably imagine, I was smiling from ear to ear this morning and very happy to see his doctors for a change :)

Of course, in true Ty fashion, that feeling of relief just wasn't meant to last.  Ty was restless during the entire car ride home.  I just couldn't wait to lay down in bed with him and snuggle him to sleep when we got home.  As soon as he laid down, though, he started wheezing.  Bad.  His upper respiratory congestion is getting worse and worse and Lou and I are totally on edge.  We called Sloan for a prescription, but his doctor wanted to see Ty if his breathing is that bad.  The medication I was requesting was something that was given to him to dry him up during our last hospital stay and it worked so well, but I was told that they only use it inpatient and an outpatient prescription just isn't an option.  Argh!  Lou and I created a make-shift suction with a giant syringe and a tube... we put a humidifier in his room... we gave him an antihistamine, and now we are just waiting.  Listening to him struggle with every breath, and looking at each other with the question, "should we go?"  The last thing we want to subject him to is another long car ride and an ER visit, but I'm just not sure where this is going to go.  If he stays the same, I think we can stay home and just keep trying the homeopathic remedies like a steamy shower, but if this gets much worse we are going to have to go back to the hospital. I just feel gyped.  We had a few hours of feeling good, and now we are filled with panic and concern again. I have a feeling I will be sleeping in a hospital bed tonight but I hope not. We'll keep you posted.

Wednesday, June 15, 2011

Don't panic

Lou and I are trying desperately to hold it together tonight.  Trying to be patient - not to panic.  Ty's speech is getting worse.  When he tries to clap his hands or bring a cup to his mouth, he can't do it.  His aim is off by a mile.  With the cup he not only misses his mouth, he misses his entire face.  Those are all tell-tale signs of problems within his Cerebellum, which is the part of the brain where his cancer has recently spread.  It affects coordination.  His doctor says that this it sounds like more than side effects from chemotherapy - that something neurological is going on. 

What is making this even harder to accept is that I've been trying so hard to deny that the cancer even spread to that area.  I was sure that if I was positive enough, if I believed with enough certainty and if I prayed enough, that the next scan would show that there is no sign of cancer in his Cerebellum after all.  Obviously we are on our knees, begging.  We want so desperately for this to work.  Just tell me what I need to do and I'll do it.

What we are holding onto is the fact that tumor destruction can be just as devastating as tumor growth.  Meaning, that if the chemo is blasting those tumors with enough force, it may cause bleeding and swelling in the brain that can cause just as many symptoms than if the tumors were to grow.  I am certain that this is what Ty is experiencing because it came on so strong in just two days time (and, two days following the administration of some heavy duty toxins).  I think I would have noticed a more gradual progression if his cancer was breaking through the treatment.  It's just hitting us so hard because we were in denial that these Cerebellum tumors even existed (I know what the scans showed, but I didn't want to believe it).  We saw Ty doing so well just days ago, it is just so friggin' hard to see him fall back down again like this.  It's like there is a weight on my chest... my heart hurts. At least he handles it like a champ.  Someone mentioned how in his video he always manages to keep a smile on his beautiful face.  That is so true!  Today he smiled and laughed at how funny it was when he was trying to clap!  I had to hold myself together, trying not to break down and cry right then and there - his smiling face helped me, but he still saw the tears.  Sometimes I just can't stop them. 

We talked about it while we snuggled up in bed tonight.  I told him to keep up his fighting spirit and he said "okay" so sweetly.  I told him that I hate cancer and I need him to keep being so strong and he said "okay, I hate cancer, too."  He also smiled and said "I wub you" as he drifted off to sleep.    I wub you, too, Ty.  I wub you so much.  Big much.  HUGE much.  I love you the most.  I love you infinity.  You are my super hero and you can do this.

We are scheduled to return to the hospital for a check-up and bloodwork on Friday.  His doctor mentioned getting an MRI, but I'm not sure I want to.  If it is going to be unclear as to whether they are seeing tumor growth or destruction, then I don't even want to know.  I've had enough ambiguity.  The treatment is done and we have to wait out the course of this cycle anyway, so in my opinion I would rather get a more definitive scan three weeks from now (unless the doctors convince me otherwise).  I just hope he improves before Friday so we can get through these days a little easier, and so Ty can enjoy himself again.  He has been pretty much sleeping for the past 48 hours.  This new chemo has really knocked him out.  When he is not sleeping, he is feeling pretty bad in general, with the exception of a few 15 minute intervals where he just seems to snap out of it.  Oh man, I wish you could see him during those times.  You wouldn't believe what a sport he is. He is just the best kid in the world. 

Goodnight everyone.  Thank you so much for caring about our special boy.  With love to you all, The Campbell's. 

Tuesday, June 14, 2011

Video Montage

This video includes a lot of photos you have probably seen over the course of the past 10 months.  Some may be a little difficult to look at, but I wanted to illlustrate the truth about all Ty has been through.  Thank you so much, Janine, for helping me do this!  I enjoyed reflecting on what has been a challenging journey to say the least. Sometimes it feels like years since this all began. 

Ty has been sleeping it off quite a bit, but otherwise he's doing well.  We had a relatively quiet day on the couch watching Blue's Clues.  Go Chemo!

Ty Louis Campbell - Here Comes the Sun

Monday, June 13, 2011

He will get through this

I received great advice tonight.  I have to stop worrying about every small thing that Ty does.  I had a very emotional day because I am allowing too many negative thoughts into my head.  Just because his speech isn't great today, or because he's sleeping so much and a little more shaky, doesn't mean his cancer is spreading.  I just need to remind myself that this poor kid is three years old and just finished his fourth round of heavy duty chemotherapy after a rigorous six weeks of radiation therapy.  Of course he's tired.  I wouldn't be able to talk very well if I was pumped with all of those meds either.  And, all of those symptoms are listed as potential side effects to the chemo.  They also may indicate tumor destruction, which is what this is all about. 

Ty is a special boy with an incredible spirit and he will get through this.  Thank you, all of you, for always reminding me of this.  You are all so positive, and that is helping our boy heal while it helps to keep me going strong for my family. 

As promised, here he is playing with his little brother just this past Saturday.  Gavin is getting SO BIG!  I have so many visions of the day that they are running around the house together, playing independently as brothers should.  I can't wait to see it. 


Tonight Ty received his last dose of Temodar and then we are off for the next three weeks.  MRI, kidney function tests and hearing tests will be scheduled for the 5th or 6th of July, then his next cycle should begin July 7th or 8th.  I can't tell you how strangely refreshing it is to have some sort of plan in place like this.  It is the first time since we began this treacherous journey that his medical team sat us down with a calendar in front to begin planning in advance for next steps.  Before this, it was nothing but a whirlwind of unpredictable predicaments!  Finally, there is some solace in having an idea of what to expect over the next few weeks.  Of course, I would prefer to know what lies ahead over the next few months and when, exactly, he will be cured so we can put this all behind us (!)... but I'll take it.  Waiting for the next MRI is the worst part of all.  I am confident, though, that it will bring positive results. 

Have a good night everyone.  XOXO love always from Ty. 

Sunday, June 12, 2011

Hugs around the neck

Weeks ago, Lou was looking at a friend's photograph and mentioned how unfair it felt to see her son with his arms wrapped around her neck; the two of them sporting ear-to-ear smiles for the camera.  We just wanted to be able to hug Ty the same way.  He was so weak for so long, at the time we started to forget what a giant hug around the neck feels like. If you think about it, the neck is the best place for those little arms to reach around and give a genuine, love-filled squeeze.  When I would carry Ty around, I used to have to pull on his limp arms and prop them up on my shoulders until gravity would eventually carry them back down to his side.  It was so depressing.  I am telling you all of this only to help you understand how far he has come in such a short period of time. 

Tonight I laid in bed with Ty as he held me around the neck, tighter than ever, and drifted off to sleep.  Slowly but surely, he is getting there. He gives the best hugs now, he is sitting up without support again, and he can roll from one side to another in bed to help get himself comfortable - thank God because he was constantly waking me up to have me turn him from one side to another.  Imagine feeling the need to toss and turn at night but not being able to do so?  I think that's why he has such trouble sleeping.  Lou and I have also been getting him to stand up on his feet for a few seconds at a time at least once every day (with our support, of course, but he can almost hold his own weight).  After I held him up today, he said to me "that was a long time, Mommy, I'm getting stronger!"  You sure are, baby boy. 

I just hope his physical improvement continues at this pace.  Since chemo last week, he is spending more time laying down again and I just don't want to lose momentum.  He isn't feeling well, and with the new drug added we don't know what to expect from him in coming weeks.  I pray that he begins to feel better soon after we finish with the oral chemo (tomorrow night is his last dose).   

Lou and I are just so worried about our little guy.  This weekend was so difficult for him and we just have to keep reminding one another that his symptoms are very likely from tumor activity as a result of effective chemotherapy treatment.  Regardless, we can't help but tear up when we notice his speech slurring a little more or his mouth opening in a gesture he used to do often way back in August to relieve pressure.  Why did this have to happen to us?  To him?  I'll never ever understand.  Well, not during my time on this earth anyway.  It's just so unfair. 

Ty isn't in much pain, which is huge.  In fact, he is practically off morphine which is totally amazing (I am so afraid I am jinxing him by writing that, but enough time has passed that I hope it's for good). He has a lot of nausea and he just seems to feel like c*ap but he can't communicate it well so he spends a lot of the day whining, crying and trying to get comfortable.  He throws up pretty often, but not as much as I feared.  We are managing his symptoms well with anti-nausea medications and they seem to be helping quite a bit.  He has a lot of ups and downs through the day, I think mostly because he is so tired on top of everything and that can bring on mood swings.  During his ups, though, he couldn't be sweeter.  You would never think this kid is going through all that he's been through.  Unfortunately, he only feels good like that for about an hour or two at a time.  Lou and I try to make the most of those times by playing whatever he wants, reading his favorite stories and stealing as many smiling hugs as we can.   

Forgive me for my delayed posts.  Ty has been very needy, especially at night, so I don't get much time to get online.  In fact, it sounds like he just woke up again so I'll have to cut this short.  I intended on posting a video of him and his brother playing so sweetly, but I will have to do that tomorrow.  In the meantime, goodnight to you all and we love you. 

Thursday, June 9, 2011

Chemo - Round 4

My mom and I are sitting with Ty as his next cycle of chemo begins.  It involves a six hour infusion of Cisplatin that will remain in his system for 28 days.  We are also adding an oral chemo called Temodar (when I last posted about this I was mistaken when I thought it was going to be Etoposide).  The Temodar is intended to add a bit more punch to his regimen.  It will help Ty to beat up the cancer :) 

Ty tolerated the last round of Cisplatin very well, with the exception of his loss of appetite and altered taste he was really feeling good.  I hope he will do just as well this time around, knowing that we can expect the worst reaction over the first 48 hours.  Today and tomorrow will be rough, but he should begin to feel better over the weekend.  As for the Temodar, the biggest side effect concern is constipation.  Certainly no big deal considering all that Ty has been through, otherwise.  He can certainly tolerate that, he is plenty experienced because that is also a huge side effect of morphine. 

I am disappointed that we couldn't begin yesterday because now Ty won't be able to stop by the Chico's store during the fundraiser today.  I am going to pop in and represent the Campbell's, though.  I can't wait to see his adorable picture out in front of the store.  It's very exciting and his doctor's are all very happy about it knowing that all proceeds will be donated to pediatric brain tumor research here at Sloan Kettering. 

In the big toy room here at the day hospital I bumped into another little boy who played Bingo with us weeks ago on the inpatient side.  Frankie.  He is totally adorable and he looks AMAZING!!  It is very helpful to see him looking so good.  He is here for a week of radiation intended to wipe out any remaining cancer cells in his abdomen and then he will be free and clear and off to Pre-K in September.  YAY!  I can't wait to report similar success for Ty.  He can do it, too.  I just know it.  I was so excited for such great news (for a change). 

My cell phone has been broken for several days and I am anxiously awaiting a new one in the mail.  It's too bad because I wish I could share a picture of Ty right now.  He is eating a huge buttered roll and watching Blue's Clues as if it's nothing.  I am so proud of him, always.  If I don't get a chance to update you all later today, I will be sure to post again tomorrow.  Thanks to everyone for thinking of us and praying for Ty. 

Tuesday, June 7, 2011

Great day today

I'm sitting here in Ty's corner on the couch.  I feel like if he walked in here right now I would get yelled at :)  It's as if I am in violation.  I can't help but think it, but with all the heartbreak I've experienced in the past couple of weeks, I can't stop my mind from having fleeting thoughts about what it would be like if this wasn't Ty's corner anymore.  I think I would want to get rid of this couch.  We would have to burn it.  I would never feel comfortable in this spot, just like I don't feel 100% comfortable sitting here right now.  But, it does help me feel so close to him to snuggle my butt into the same cozy spot where he rests his all day long :)

We had a great day today.  Especially tonight.  Lou was home and we played together as a family for over an hour.  At one point I was running around chasing Gavin like crazy as we both screamed and threw ourselves on the floor over and over again.  Ty was loving it, and after a while he wanted to get in on the action.  He asked to sit on the floor so he could pretend to push me down.  I agreed and couldn't believe how well he sat straight up on the hard floor.  He would hold his hand out to my shoulder or head and push me as I pretended to get thrown across the room.  The laughs, screeches and bubbling giggles that were erupting from this room were just heavenly.  I don't ever want to forget tonight.  It was so normal and so fun for all of us.  We even let Gavin stay up extra late so we could enjoy it as long as possible.  Thank you, God. 

Ty will not be starting his chemo tomorrow.  Instead he is on the schedule for Thursday.  The Cisplatin that will be adminstered can be very harmful to the kidneys, so I had to drop off a 24-hour urine sample for analysis in order for him to be granted clearance.  Unfortunately, the results were "borderline".  Meaning, Ty's doctor was debating on whether or not he should lower the dosage to be safe in order to avoid any potential kidney damage.  Instead of taking a chance at lowering the dose when it may not be necessary (or administering too strong of a dose that could hurt him, for that matter) we agreed that it would be best to delay treatment one more day so that Ty can go through a more detailed kidney function test.  Tomorrow we will go to Sloan Kettering so that his blood can be injected with a dye and monitored as the dye travels through his system and is excreted.  That will give a more accurate picture of how his kidneys are absorbing the drug and will help his doctors determine the strongest, yet safest, dose.  It takes about 3 or 4 hours, plus Ty will have another baseline hearing test (another potential side effect of this particular drug is hearing loss) so it will be a long day for us.  He is at the worst age for all of this.  Trying to get him to be patient and sit still for all of this testing is difficult, but he really is a good sport about it.  Back to the hospital Thursday for his 6-hour infusion, and again on Friday for more bloodwork and fluids.  I hope the little fighter tolerates it well.  He is feeling so good, I think he will do great. 

Build a Bear
When Ty first got sick, he recieved a gift certificate to Build a Bear.  It was so nice of our friends, but Ty got so sick and was on such a crazy roller coaster that we never had the chance to visit the store since.  Well, when we were on our way back from the hosptial on Friday I promised Ty a toy.  We stopped at a mall in Westchester on the way home and there was a Build a Bear there.  In true Ty fashion, he picked the most unique and stand-out bear in the bunch.  A bright-colored, tie-dyed bear with peace signs all over it.  He helped to stuff the bear and he picked out a heart for his bear.  He didn't think the bear should have any clothes or anything else, he loved the bear just the way he made him.  Ty named the bear Rainbow and he has been sleeping with him ever since :)  This is the only stuffed animal he ever, ever slept with.  So precious!

Ty snuggling with Rainbow
Now I am going to try and steal Rainbows spot.  Goodnight and sweet dreams.  With all of our love, XOXO.

Monday, June 6, 2011

Peace out, love Ty

Before Ty was diagnosed, he used to do the cutest thing... He spent every day at Sissy's house while I was at work, and during that time Sissy's daughter Colleen taught him to say "Peace Out!"  The cutest part about it was that he could never hold out his fingers in a real peace sign; instead he would point with his index fingers on each hand and bring them both together in front of his face.  Today is the first time Ty learned to do something that is more advanced than what he was able to do before cancer.  He learned to hold out two fingers in a peace sign.  Actually, we were teaching him to hold out his fingers to show how old his brother is (Gavin is two) and when he realized what he was doing he said,. "Hey!  Peace OUT!"  I can barely express how proud I am.  He is doing so well.  On top of that, he ate a half square of cheese, 3/4 of a turkey roll-up, five potato chips and a mini ice pop.  That is more than he has eaten in weeks - no exaggeration. 


They call each treatment of chemotherapy a "cycle" for a very good reason.  The patient starts out doing well, the chemo is adminstered and wipes them out, then as the patient recovers and gets stronger it's time to start all over again.  I feel like it was just yesterday that I was preparing for this past cycle to begin. I was saying how much I hated to think of Ty starting chemo again because he was finally feeling so good.  Today I am thinking the exact same thing.  He hasn't required any pain medication in three days straight, his nausea is under control and his appetite is just starting to creep back into the picture.  Argh! 

I wasn't able to get Ty's bloodwork done until later this afternoon so I'm not sure if he will get clearance to begin treatment Wednesday or Thursday, but it will definitely be this week.  I have a love/hate relationship with these drugs, but believe me, I will put all of the hate aside if it saves my little boy.  Mouth sores, hair loss, fevers, vomiting, head pain... bring it on as long as there is an end in sight when he is cured.

Shop for a Cause at Chico's
Many of you may be familiar with the women's clothing store and cataloguer, Chico's.  A great friend of mine recently moved to Florida to work at their headquarters and she shared Ty's story with her new employer.  As a result, the retailer was inspired to host a "Ty Day" on this Thursday, June 9th.  They will be donating ten percent of all pre-tax sales in their two Manhattan stores to the pediatric brain tumor fund at Memorial Sloan Kettering Cancer Center.  If you live in the city, please spread the word!  Ty and I will be stopping by the store on the Upper East Side (1310 Third Ave/75th Street) after our hospital appointment that day to check it out.  I can't believe that it is really happening!  They are stuffing shopping bags with postcards to promote the event and hanging a sign outside each location with a beautiful picture of Ty. 

My family is just so touched by this gesture.  I never thought I would see such a large corporation step up for the cause like this, and I am so excited about it.  I am so inspired to continue sharing Ty's story in an effort to build awareness for pediatric cancer.  I hope this is only the beginning. 

Thank you all for caring for us and for Ty.  We are overwhelmed by your love and support. 

Sunday, June 5, 2011

Sunday is a day of rest

The Campbell's spent most of the day at home, doing nothing much of anything.  Well, we did attempt to make a pizza for the first time in our pizza oven... Obviously, we have a lot to learn :)  HAHAHA!

This is not roadkill.  It is our first homemade pizza!
The Pawling Triathalon and Relay for Life in Mahopac yesterday were both wonderful.  It was a very long day, though, so I'm glad we all took it easy today.  Ty's tri team was made up of Lou, his sister Debi, and two great friends since high school, Sally and Barbara.  It was the very first triatholon for Debi, Sally and Barbara and I am just so happy that our little guy inspired them all to conquer such an amazing feat!  On that note, a friend from Long Beach, Zev, also ran his very first marathon in Ty's honor a couple of months ago.  I posted about it at the time, but it's such an amazing accomplishment that I feel I need to mention it again. 
Debi wearing the "Team Shirt"
I had never been to a Relay for Life event before.  Lou has volunteered before and explained to me what it is all about, but still I was completely taken aback at what an amazing event it is.  For those who aren't familair with it, Relay for Life is an event sponsored by the American Cancer Society where teams of people camp out at a local high school, park, or fairground and take turns walking or running around a track or path. Each team is asked to have a representative on the track at all times during the event. Because cancer never sleeps, Relays are overnight events that last up to 24 hours in length. The number of people participating is totally overwhelming and inspiring.  I totally neglected to take pictures, but I hope to get some from our friends who were there so I can post a picture of everyone taking a lap with Ty in his purple "survivor" shirt.  What a great feeling it was.  Two other friends from Lou's high school were there with us donning purple shirts.  It is so inspiring to see how many brave people are fighting cancer and how many have kicked cancer's butt!

It goes to show you that whenever you start feeling like you can't do it... think of Ty and all the pain he has endured at such a young age.  That's what keeps me going, that's for sure.  How can I be weak when he has shown such strength?

Lou gave Ty a buzz cut today.  He didn't lose his hair during this round of chemo, but it was growing back with a funny texture and started to look wild.  Besides, he begins his next cycle next week and there is a 50% chance he will lose it again, so it's easier if his hair is shorter to start off with.  He was a great sport about it.

 
Can you believe how strong he is getting?  There he is, sitting up straight!  When I carry him, he also holds his head out and away from my body.  I am hearing "he looks tired" a lot less from passerbys!!  That's because these days he is looking more and more wide-eyed, bushy-tailed and ready to take on the world!  If his numbers look good tomorrow (bloodwork), his doctors will decide whether or not we can add another drug to this round of chemo.  Etoposide.  It will be in conjunction with the Cisplatin that is already planned to be administed on Wednesday or Thursday.  If we do, it means Ty will get much sicker this time around.  But, it also means he is healthy enough to fight back with stronger medication and that is important.  We don't want to allow his tumors ANY breathing room.  We want to give it all we got. 

Handsome haircut (and blue lollipop lips)
There is one incident from yesterday that I just have to mention before signing off tonight.  When I was rushing to the park to see Ty's team cross the finish line during the Triathalon, there were police officers and volunteers directing traffic all over town as the bikers and runners were making their way through the course.  At the park entrance, there were two men with "Sheriff" reflector vests on and patrol hats.  I told the first gentleman that I wanted to pull into the parking lot to see my husband cross the finish line.  He said "Sure, you can park right behind that car."  When the other sheriff heard this, he came rushing over saying "No she can't, no one can enter the parking lot because runners are crossing this street."  I explained to him that I was literally going to park 50 feet ahead, and I would of course be very careful.  I told him that my three-year-old son is handicapped and I just needed to get into the parking lot. 
"I understand that, but I can't let you park here!" he told me.
"You don't understand, but that's okay.  What am I supposed to do, then?"
"You can go down that street there and see if there is some parking up the road"
"That street there?  That's a two-lane street with no shoulder, I can't park there?  He is handicapped??"
"I don't know, you can drop them off here and then try to park up the road?"
"Are you serious??  They are three and two years old, I can't drop them off and go park!!  Won't you make an exception?  He has cancer and he is a main sponsor of the race!  We just want to see his team finish the race?"
"I understand that, but I canNOT let you park here!!!"
"Okay, so I'm gonna drive up the road and park, walk down a busy street with no shoulder, strolling my three year old and two year old down the middle of the road... because THAT's the SAFE OPTION??"

And, that's what I had to do.  I was furious.  Beyond furious.  Looking back, I wish I had just pulled into the lot and dared him to give me a ticket instead.  In the time we argued, not a single runner had even passed us.  In the time I walked up the road, several cars had to drive past me and my double stroller.  I'm still fuming.  Lou was sure to complain to any and every police officer he saw on site, and he went directly to the race organizers to tell them what had happened.  I guess things like that are always going to happen, but it just made me so mad. 

Goodnight all.  Hope you had a wonderful weekend. 

Friday, June 3, 2011

Fly Remy Fly

The memorial service for baby Remy was beautiful and heartbreaking.  As Mary's sister said in her eulogy, my heart was warmed and shattered at the same time.  My cousin Pete also said a eulogy that was so touching with such clear perspective, I was simply blown away.  Talk about inspiring. 

Ty came with us to both Bernice's services earlier this week, and Remy's today.  He gave Uncle Harry a huge hug and kiss when he saw how sad he was about his mom.  Of course, he didn't understand why, but he knew his Uncle was hurting.  Today he did the same for Pete and Mary.  He held out both arms and grabbed their faces in an effort to give them the biggest hug and kiss he is capable of. He was such a good boy, it's as if he could feel his two new angels perched on each shoulder.  Two beautiful souls, one old and one new.

A friend of Pete and Mary sang this beautiful lullaby as we said our goodbyes to their baby girl.  It remember receiving this on a Baby Lullaby CD when Ty was born, and hearing it again like this took my breath away. 


Ty is doing so well!  He hasn't needed any pain meds for several days in a row, and I think you all know what a big deal that is.  I hate to knock him down with chemo again next week, but at the same time I am so eager because he is responding so well.  Tomorrow, Ty's foundation is supporting the Pawling Triathalon.  Lou, his sister Debi, and a bunch of friends will be racing for Ty.  Then we will be rushing to Mahopac so Ty can participate in the survivors' lap at Relay for Life.  It should be a wonderful day dedicated to the greatest cause.  I can't wait to share pictures with you all.  Thank you for your love and continued support.