Thursday, May 31, 2012

Where does the time go?

I was filling out paperwork for Ty and I realized he is four years/eight months old.  I can't believe it!  He is closer to five than I thought - so much!  Five just seems like such a big boy!  I remember Ty's neurosurgeon telling us a funny quote from his then four-year old son (who, undoubtedly, also believes five to be a very big number).  When I asked him how old he was, he said five without missing a beat.  His dad corrected him and told me he is four, but that he really can't wait to be five because it just seems so exciting.  He once told his son to settle down soon because he only has 15 minutes left before bedtime.  His son responded with a plea, "No!  Can I please have FIVE more minutes??  FIVE, pleeezee??"  How cute.

So, Ty will be five in a few months.  I don't know how I feel about it.  Cancer aside, grasping how fast my children are growing is actually depressing me a bit.  I'm so proud of them both, but I also feel so desperate because I want to hold onto this age and squeeze more joy out of it.  They are so cute, I can't let it go!!  :)

Sadly, I was talking to my sister about the daily oxygen therapy and what a strain it is on Ty and on all of us - but it's helping and that's what's most important.  When we started this, we expected 14-16 treatments (okay, so three weeks).  Then he was doing well and they said he should have at least a full course of 30 visits.  That was a lot more to swallow.  We began in April and now his 30th treatment will be tomorrow morning!  I would celebrate, but we have extended the care once again and his total treatment has bumped up to a full 60-day course of oxygen therapy.  That means we are only halfway done with this daily routine and we'll be going almost all summer.  It isn't easy, but it's working and that's all that matters.  Mentally, he doesn't understand why we are doing this to him, but physically he is improving in so many ways so how can we not move forward?  In fact, I imagine that someday hyperbaric oxygen therapy will be offered in conjunction with radiation treatment in an effort to prevent late term side effects of radiation like Ty is suffering from.  If only that was an option a year ago. 

So, when I talk to my sister during the ride home from oxygen and the corresponding therapy at Blythedale, we talk about the positives... it will be over soon.  That by then he'll be doing great (maybe).  I said to her, "Yeah, but you know what? I've been living my life wishing for every day to just be over with so that we can hurry up and find a healthier future.  Chemo is about a month long cycle each time, with lots of bad days that we just have to keep our heads up during and do whatever we can for Ty. Watching him have head pain and muscle pain.  Watching him getting really frustrated that he can't play with toys or sit up on the floor.  Missing his preschool.  Waking him up so early every morning to go somewhere he doesn't want to go.  Over 200 nights in the hospital last year.  It all just makes me want to fast forward through these tough times.  That's sad.  We are coming up to our two year anniversary since his diagnosis and there were so many moments on this journey that I will cherish always.  I am a changed and better person for it.  But at the same time, what kind of life do I lead wishing each day would end just a little faster.  What do I think is waiting for me in the future?  I know what I think.  A beautiful, healthy, happy boy who can stand on his own two feet and wear a tee shirt that reads "Cancer Fears Me".  I just wish we didn't have to lose so much time as a family to get there. 

You all know that I am dedicated to sharing Ty's story with anyone who will listen.  I was thrown into this "cancer world" kicking and screaming, but today it defines me.  Now and forever.  I will never, ever be the same and a day will not go by that I don't think about ways to support the fight against this disgusting disease.  I just need to find more time to try and execute some of the ideas I have in my head.  They are good, I know they are and I am going to make small progress until finally something big happens.  Something good in the world of childhood cancer, and all because of Ty.

Take this fundraiser that our friends are throwing for Ty this weekend.  It's absolutely amazing.  Just the thought of what one person could do with an idea.  I love it, Melissa, and couldn't be more excited about all you have done. 

The large majority of Ty's followers are women who feel so deeply for our situation.  Women are so powerful and so passionate.  Take breast cancer for awareness... Women get things done!  Damn!  I only hope that some day all the cancer moms out there can band together to create the same kind of awareness for all of the poor babies that are afflicted with all types of cancer.  The largest preventative right now is just that we are too overwhelmed caring for our sick children, or worse, overwhelmed with grief from a loss.  Getting up in the morning can be hard enough. 

Pediatric cancer is truely the cruelest and most unfair of all.  Yet, I walk the halls of this hospital and these kids never cease to amaze me.  A four year old girl pushing her poll around the toy room playfully while toxic chemotherapy pours into her veins.  A preteen girl who just lost her leg walking the halls on crutches and smiling at her accomplishment.  Another girl who lost her long beautiful hair at the tough age of 16 and still plans to go to prom.  They are superstars.  I want to help them.  I need more time, but I know it will happen. 


So, should I feel better about Ty if he makes it to nine?  No, I don't think I'll ever breathe easy.  But I will say this... if Ty makes it to nine it won't be because of high dose chemotherapy for the next five years - his body wouldn't be able to handle it.  There needs to be more options.  More alternative treatment options designed specifically for the rarities found in pediatric cancers.  Spreading awareness and generating funds to support medical research is the only way Ty will get to nine.  Prayer too, of course, but I can't sit around when there are new options on the horizon that need attention.  Cures waiting to be found.  I am supposed to do more with this, for Ty and for all of them.  I hope I can.  Spreading awareness through this website is my first step, but I have ideas for bigger, better things :)  Have faith in me, even if I don't sound like I have much faith in myself.  Today I'm tired, tomorrow inspired. 

Share Ty's story!  Run a 5K for kids cancer!  Make a donation to someone else who is!  Register at Be The Match bone marrow registry.  We can all make a difference.

Wednesday, May 30, 2012

Yay for poop

I'm sorry about the mildly gross title of this post, but I am too excited for Ty not to share.

Lou gave me a much needed break this morning and took the day off to spend with Ty at therapy. When he called me and joked about how Ty pooped in his diaper on the way to oxygen therapy, I thought that it really was just a joke.  But then I realized that he really did, and that's amazing.   Since early March, Ty hasn't been able to go to the bathroom because his muscles are all so messed up. Every three to four days I give him a suppository and he screams about it every time.  He absolutely hates it.  So, knowing that he went on his own this morning is something to be very excited about.  It means Ty may regain another ounce of normalcy in his life.  

Yesterday was a great day.  Ty was such a good boy in the oxygen chamber, he didn't cry or carry on. Then he worked really hard in therapy.  He was showing off how loud his voice is getting.  He was so proud of the movement he is getting in his arms, too.  I know his PT and OT were taken by surprise.  Ty is usually reluctant, cranky and in some pain during therapy.  Yesterday he was feeling really good and it was obvious.  He played really well.  He had a lot of energy.  And, his head control was much improved from last week.  I read hope in their faces.  

Another  sign of continued improvement is the stretching he's been doing.  I see him doing a lot of full body stretches when he's lying down and notice how his legs contract, his abdomen tightens, and he pulls his head forward.  All of this shows promise for continued improvement.  I feel like such a broken record every time I say something like "slowly but surely", "baby steps", or "one day at a time" but for someone in my shoes, these phrases ring more true than you can imagine.

Unfortunately, I have had a lot of practice with getting excited over things like an independent poop, a wiggle of a toe, a sip from a straw, hell - a spoken word.  Ty meets so many miraculous milestones, only to be robbed of them over and over again.   This kid will never stop, though.  He is the sweetest, most amazing boy God ever created.  Even if we have to take two steps forward and one step back all the way to the finish line - we will still finish the race as victors.  Cancer can eat our dust :)

This morning I was driving for a while, lost in thought.  I was thinking about how great it was to have our friends Stan and Beth with us this past weekend.  Stan and Beth have been with us a lot through this journey, and they were there for Ty's first steps one month after his first surgery, and again for his first steps after his craniotomy early last year.  They bring us good luck!  Ty wasn't close to taking any steps this weekend, but I like to think that our good luck charms left Ty with some of the new movements we are seeing since they left :)  

When I replay the scene of Ty in his hospital room, wearing nothing but a diaper and taking those first steps on the cold hospital floor during his early days battling this terrible disease, I can't help but cry over how young he was, how much he was hurting, and how much he has endured since then.  I allow myself to question whether or not I would do it all over again, knowing what I know, even if Ty doesn't end up winning this fight.  It's hard to say, honestly, but then all I need to do is think about the night before.  The love I feel when we lay face to face like we always do.  Every day with him is such a blessing.  An incredible gift.  I am the luckiest woman alive.  

This  is a video we took that night.  It was September 12, 2010.  How much has happened.  How far he has come!


I wrote today's blog entry on Ty's i-pad this morning (one of the first gifts he received when he got sick and it has been a great way to pass time in the hospital).  Anyway, I just came across a draft of another post that I wrote on January 4, 2011 but never posted - that was when Ty was still on hospice care.  It echoes what I was just writing about, imagining losing our little fighter and whether or not we would do it all over again.  I love having this website because it allows me to recall all of Ty's amazing triumphs, and it gives me perspective on where our lives are today.  It's not easy, but I will always try to love every minute of it.  

I cried so much on my way home from the hospital today.  It was uncontrollable. Lou couldn't really understand it either because we didn't get any terrible news from the docs.  In fact, it was nothing new.  I guess my visit with Ty's doctors just reminded me of the fact that we are dealing with undeniably terminal cancer.  I didn't expect the doctors to tell me anything different, but Ty has been doing so incredibly well, i guess I just had this wish that I would hear them tell me they were wrong. That he was actually getting better. That my dreams have come true.  

I had a better grasp on the reality of the situation four weeks ago.  When the doctor told me Ty had as little as four weeks to live, I accepted it.  I think it was because it followed treacherous stay in the hospital where Ty was in so much pain and so weak, every time I reflected on it I reflected on his suffering.  But today, four weeks later, I am so much weaker.  It's like i love him even more with every passing day (as if that were possible).  And with every day, i am convincing myself more and more that he is getting better because he is doing so well at home.   When I reflect on him and his health now, I think of him laughing out loud singing songs, or i think of him walking across e kitchen holding daddies hand or playing in the bathtub for the first time since  July. Its just harder to accept it now.  I am beyond scared of monday's MRI.

A grin rises in my face when reading that last line.  As much as I hurt, just look at how far Ty has come.  He is a miracle and he will continue to beat the odds.  Watch out muddy puddles, here comes Ty :)



Monday, May 28, 2012

Wonderful weekend

Before I share a quick update on our weekend that was filled with smiles, BBQ and sunshine, let me just acknowledge my utmost respect and appreciation for our soldiers and veterans.  There is nothing more honorable than serving our country and maintaining our freedom.  I am forever grateful.  God bless all of our courageous soldiers overseas, the families who miss them, and those who made the ultimate sacrifice for this beautiful country so that you and I can be free each and every day. 


This Memorial Day weekend was filled with blessings for the Campbell family.  We were surrounded by friends and family who came to our home with prepared meals and bags full of loot that would keep Ty smiling.  And, smile he did.  He was happier than I have seen him in a very, very, very long time.  Lou, Ty, Gavin and I were pampered for three days straight.  It was such a treat. 

The greatest treat of all was that Ty was happy.  Here are some adorable pictures of my sweet, sweet boys.  Those smiles say it all.  Ty's expressions are priceless.





Tomorrow we will return to our early morning oxygen routine, followed by school and therapies at Blythedale.  It's going to be tough, but tomorrow is going to be tough on all of us, isn't it?  :)  

Here are just two amazing conversations I had with these boys over the past three days.  I want to document them because it's times like these that I want to freeze so I can replay them in my heart whenever I need to.  First is my conversation with Gavin, the second with Ty.

Gavin and I had to run an errand together on Saturday and we stopped for pizza and ice cream.  While we sat outside eating our ice cream cones, I was very quiet and lost in thought as I watched a family of four ride by on their bicycles.  Both of the boys were still riding with training wheels.  I thought about how that was supposed to be my life... how that was supposed to be Ty and Gavin riding their bike alongside Lou and I on a beautiful day.  I must have been quiet for a while, but I realized that Gavin was having some very similar thoughts when he said the following:

"I hab a bro-tee too!"
"Huh?  You have a broken shoe?" I asked him.  He can be very hard to understand.
"No.. I hab a bro-tee too!  Ty!"
"Oh.  You have a brother, too?  Ty?"
"Yeah."
"What made you think of that?  What are you thinking about your brother?"
"I lub my bro-tee soo much."

It's true, he really does love Ty, so much.  Then, today, Ty had my heart in tears (but my face wouldn't dare show it).  Out of the blue, Ty tells me...

"Mama.  I'm gunna jump in muddy puddles."
"You're gonna jump in muddy puddles?"
"Yeah.  When I can jump."
"Oh, yes, I can't wait to see you jump in muddy puddles."
"But Mama, it has to be raining that day, too."

Those words broke my heart because he is so limited with what he can do, but they also rekindled the flame in my soul that reminds me to believe that anything is possible.  Anything.  Here's to Ty jumping in muddy puddles while the rain pours down on his smiling face.  I won't even make him take off his shoes when he walks through the door.   

P.S. I have several emails to answer.  Thanks to all who have reached out.  I promise you will hear from me over the next couple of days :) 

Friday, May 25, 2012

Gratitude

I've been exhausted the past two weeks, so I haven't had the energy to post much.  In fact, yesterday I was told by three different people that I looked either "tired" or "exhausted".  I wanted to be insulted, but I couldn't because I knew they were totally right.  I am spent.  I tried to fix the situation by going to bed very early last night.  9:30!  It would have been heavenly, except I couldn't actually fall asleep until after 11:30, and then Gavin was up for over an hour in the wee early morning.  I can't win!  Regardless, I gave myself some extra time for makeup this morning.  I wanted to look more presentable and I thought I succeeded until someone just told me that I look "beat up."  Hmmm.  Not the look I was going for :)  TGIF.  Hello long weekend!

Ty has been doing well.  He has two issues right now, and they are minor.  The first being his emotional well being.  He is simply down in the dumps.  I know it will pass, and soon, it is just the latest hospital stay and surgery that has taken a toll on his psyche.  I think a relaxing holiday weekend will fix that right up.  The other issue is physical.  He has been having increased tone and muscle spasms, and they cause him some pain and discomfort.  Luckily they don't usually last long, and we have some new medication that starts this weekend so hopefully that will resolve itself soon. 

So, the past couple of weeks have been draining and pretty depressing, but Ty is okay, he is on the up and up, and we have so much to look forward to.



I've been wanting to post another long-overdue "thank you" to the dozens of people who have done so much for our family over the past couple of months.  But first, I want to remind you that there are so, so many families just like mine.  Living this life in parallel.  Wishing their child will be cured of cancer.  Mothers and fathers who would do anything for their bald-headed baby.  Who have to listen to them crying because their little lives are filled with pain, surgeries, needles, nausea, sore throats and weight loss and so much more.  The suffering is cruel and it's brutal.  But these kids are beautiful.  They are so full of life - more than any others because they take nothing for granted.  They are gifts from God, and we, as parents, are trying so desperately to hold onto each and every one of them. To give them the life full of fun and laughter that they deserve.  They endure so much hardship at such a young age, each and every cancer warrior has earned the right to the most perfect, healthy and happy life imaginable.  I want this for them.  I want this for Ty more than anything in the whole world.

Then there are the seven kids that die every day from cancer.  Seven families just like mine who are forced - kicking and screaming - to shift from survival mode to grieving mode.  I have imagined myself in those shoes so many times, and it is unbearable. 

I never wanted to embrace this life.  I remember sitting in the playroom at Memorial Sloan Kettering for the first time, watching a group of moms huddled together in conversation.  One wore a "team connor" tee, another a "stop cancer" hat, and another wore a tee with her son's picture on it.  All of them had different colored cancer bracelets on. I thought, "I don't want to do that.  I can't let cancer define me."  How foolish I was!  I don't have a choice.  None of us do.  So I wear my "SuperTy" and "Cure Cancer" tees, I write this blog, I follow other children on their journeys, I pass out bracelets, and more because this is THE MOST important cause and it makes me feel like I am doing a little something for these kids who deserve so much more.

Which brings me back to how grateful we are.  There have been a number of people who have been actively working toward helping my family and others like mine, and I am so grateful.   You are all doing so much for the cause, even if it's just keeping tabs on Ty and sharing his story of courage and strength with others.  All of it is increasing awareness.  Here's just some of the things that have taken place since March:
  • Events for St. Baldricks.  Thank you SO much for shaving your head in honor of Ty.  What a huge sacrifice!
  • Dragon Boat Race in Charleston - they won a gold medal for SuperTy!
  • Relay for Life - several friends have created teams for their local relay for life, in which they asked to honor Ty
  • Swim Across America - thank you to a local Pawling family who will be swimming in the Long Island Sound in honor of Ty
  • Movie Nite at Abbey Lane Elementary - a movie night fundraiser was hosted for our family, all by a little girl with an idea for Ty
  • Icing Smiles - a neighbor who I never met before poured her blood, sweat, and tears into the most amazing birthday cake for Gavin, all for an incredible pediatric cancer organization called icing smiles.
  • Gavin's Party - another friend threw Gavin the most incredible birthday party at her party place and we are so grateful for giving us a day filled with fun and laughter amidst these tough times
  • SuperTy Tee Shirt Drive - wow, I never imagined so many people would want a SuperTy tee.  A friend sold 220 tees in just a couple of weeks! 
  • Fred's Team - One of Ty's nurses is running the NYC MARATHON to raise money for pediatric cancer research (CLICK HERE to visit her page)
  • Pan Mass - Ty's Amazing Aunt Debi, is at it again (You may recall that she also ran the NYC marathon with Lou last year to raise money for Fred's Team).  She recently created Team SuperTy and is training to bike 121 miles in the upcoming Pan-Mass Challenge for pediatric cancer research funding.  (CLICK HERE to donate to her team)
In addition to all of this, the best is yet to come :)  A big fundraising event will be held at a friends house in Pawling on June 3rd.  There will be multiple vendors there to sell various products with proceeds for Ty and our family.  There will also be DOZENS of items and gift baskets for raffle.  We have so many friends and neighbors to thank for all of their contributions to this amazing event.  Especially the DiVitto family.  They will also be setting up an Alex's Lemonade Stand - one of my favorite kid's cancer charities next to St. Baldrick's and The Guardian Brain Foundation.  Please visit the page they created at Alex's Lemonade Stand to view more information on the event or make a donation in honor of Ty.  If you are interested in attending the event, we would love to see you!  Just email us at tylouiscampbell@gmail.com for more information.    

Thanks, everyone, for your love and support.  I believe in a cure for cancer, a cure for Ty, and all of you are helping us to find that cure.   

Tuesday, May 22, 2012

Back to the grind

Ty is totally amazing.  Today was awesome.  Yesterday, too.  Tomorrow we go back to the grind.  We will return to our routine oxygen treatment in the morning, and possibly school/therapies in the afternoon (although I'm considering letting Ty play hookie for one more day so we can have some fun).

We got home yesterday evening and a bath was the first thing in order.  We needed to wash all of the surgical grime that covered our poor baby, and he was happy to do it.  Despite the fact that he just had surgery Saturday night, he is feeling terrific and his pain is practically non-existent.  Two weeks ago we would never be able to move him or pick him up without him wincing in pain.  Today he is so much better off.  It is unrelated to the shunt surgery, but probably due to the improvement we saw in the brainstem area during Ty's MRI Wednesday.  The swelling is gone (thank you hyperbaric oxygen chamber!) and he is like a new kid.  Finally, he is feeling good.  Awesome, in fact. 

His physical strength is still slow to follow, but Lou and I see improvement every single day and we are filled with hope.  We are excited because we have so much faith in Ty's recovery. 

Just a couple of things to point out before I post the pictures of tubby time.  Ty was returned from the OR with a huge open wound on his cheek. It is from the tape on his face that held the tube in place (he was intubated for the duration of the surgery).  Someone in the OR was completely careless removing that tape, and ripped off several layers of skin along with it.  I am up in arms over it.  Regardless whether or not a child is under anesthesia - or a patient of any age, for that matter - they should be treated with the utmost care.  This is just another wound on my poor baby that was totally unnecessary and could have been avoided.  Hopefully the oxygen therapy will help it to heal quickly, along with the incision on his head.

bumps and bruises can't stop me from smiling :)


All Clean!



It turns out that the shunt malfunction was due to a clog in the tubing that runs from the ventricles in Ty's brain, through the burr hole in his skull, and into the valve that sits right under his skin on the side of his head.  The valve then has another, longer piece of tubing that is attached to the bottom that runs all the way into Ty's abdomen to drain excess CSF fluid into his body cavity.  To help you visualize a VP shunt, I am attaching an illustration of the concept, and a photo of the hardware.


Lou and I actually watched a video of a similar surgery performed on a small child (thank you, you-tube) just to better understand what Ty has been going through.  It was totally brutal (yet fascinating) to watch, especially when the tubing is snaked from the top of the head into the abdomen.  I'm glad that wasn't necessary this time around.  His surgeons only had to replace the one piece of tubing up top - even the valve remained in tact.  

Ty is one super kid.  This was his seventh shunt revision in 18 months.  That is practically unheard of.  His neurosurgeon can't provide a theory as to why the tubing would ever get clogged, no one can, but it's just the way things seem to happen for poor Ty.  Nothing is easy for him, yet he always prevails.  He is such an incredible inspiration.  And he's only four years old!  Imagine how amazing he will be when he's forty!  :)

One last medical update.  Ty started his next cycle of daily chemo (temodar this time).  He got sick twice last night, which was really upsetting for everyone.  After the second time - 3 in the morning - he gave me the biggest smile in the world and said "now I peel bedda."  We stayed up joking around and cleaning up for about 15 minutes or so before drifting back to sleep in our best snuggling position.  I hope he tolerates the chemo better as this continues.  He usually does so well, but I imagine with all he's been through over the past few days his belly is just extra sensitive. 

Thanks for all of your love and prayers.  Goodnight.





Sunday, May 20, 2012

Emergency - Ty in surgery

I wrote this post last night, but couldn't get online until this morning.  Ty is awake.  He is feeling okay.  No improvement in his eyes yet, but that should come quickly.  Here's what happened.

The shunt.  Need I say more?

Today, I hate my life.  I hate how cancer destroys everything even when Ty is cancer free.  We had so much planned for this weekend.  Fun plans for Ty and Gavin so we can pretend that we are a normal, happy family before the next week filled with oxygen treatment, needles, meds and therapies started up again on Monday. 

It was such a beautiful day today.  Lou allowed me to sleep late with Ty while he went out for breakfast pastries.  My mom was visiting and she had coffee ready when I came downstairs around 8:30AM.  I dressed Gavin in the most adorable outfit, ready to celebrate field day at his preschool (the same one that Ty used to go to), and my sister drove all the way from Long Island to spend the day with me.  I felt really good this morning and I was so looking forward to seeing all of our friends at the school – especially Ty’s teachers.  Ty, on the other hand, was still sleeping when my sister arrived at 10AM.  I had a hard time waking him, only to have him fall asleep again on the couch downstairs.  The panic started to set in.  I called on Lou and told him we probably had to go to the hospital.  He agreed.  I cried and cried.   We didn’t arrive until about 2PM which means Ty was pretty much asleep for 19 hours straight. 



I noticed that Ty wasn’t doing so well over the past couple of days, but I never thought it could be shunt related until Friday during PT.  He was giving everyone a really hard time about participating in the activities.  His therapists were concerned and decided not to push him – to just call it a day.  We had the nurse examine him because I noticed his eyes were crossing a bit.  I had a bad feeling in the pit of my stomach and I called Lou to make sure he watched the team reprogram Ty’s shunt on Wednesday after the MRI.  He did.  When we all got home Lou thought I might be overreacting about Ty’s eyes, because he was otherwise doing well.  Then, when we saw how tired Ty was this morning it also occurred to me that Ty had been wetting his diaper over the past 48 hours instead of asking for a “pee-pee can”.  That is unlike him.  All signs were pointing to increased intracranial pressure.

Again, we found ourselves driving 90 miles an hour to get to Memorial Sloan Kettering.  I had to yell and shake Ty every five minutes to make sure he could still be aroused.  At one point he wouldn’t open his eyes and he wouldn’t say anything I asked him to (Ty, can you hear me?  Say “yes”!  Say something Ty, say “Mommy”  You have to say something!!)  Then Lou said, “Say boogers!”  With his eyes still closed, I saw a smile come across his face and Ty said “boogers” loud and clear.  Always the clown, that kid. 

We were on the phone with the hospital on our way in, so we were told to go straight to CT on arrival.  The scan showed that his ventricles were much larger compared with Wednesday’s MRI and he was indeed suffering from hydrocephalus.  His mediport was accessed and he went to the OR within just a couple of hours for a shunt revision.   Lou and I waited in the lobby.  It was strangely quiet.  We were practically the only people there.  The hospital is lonely like that on the weekends.  Surgery took longer than I would have liked only because my nerves are shot, but when the surgeon arrived I was immediately relieved when I saw the calm in his face.  There was a clog in the tubing, he replaced it, and Ty was recovering upstairs before being moved to the PICU across the street.

Mediport being accessed, Ty is miserable

I am relieved that this was a problem that can be fixed.  When Ty came out of the OR he was pretty banged up.  He has a large, bloody incision, larger than two inches, on the top of his head.  He has a large cut on his top lip and it’s swollen from all the metal tools that were in his mouth during intubation.  He has a bruise on his leg where they placed an arterial line and bruising on his neck where the shunt tubing must have been moved around quite a bit.  There are a couple of other nicks and scratches – we never know where those come from and would love to be a fly in the wall during surgery.  Well, maybe not, I would probably pass out. 

Incision visible on top of Ty's head


When we kissed Ty goodbye in the hallway on the way to the OR, we think he knew what was going to happen.  He never cried like that before surgery.  He’s older now, though, and Lou and I think he was fully aware of what was about to happen.  Breaks our hearts.  This marks surgery number 17.  The first in 2012.  Let’s hope it’s the only one in 2012.  He’s in the PICU right now and I ended up getting a room at the Ronald McDonald House because only one parent can stay with him.  I laid in bed and snuggled him for an hour before leaving, though.  It was hard to get out of that bed, but if I didn’t I would wake up in a lot of pain and I can’t afford back or shoulder pain with how often I need to carry Ty around from place to place.   He’s no spring chicken anymore, I need to make sure my back is in good shape so I opted to sleep here :)

One of my favorite conversations from tonight was with Ty’s neurosurgeon.  When Lou asked him what his thoughts were on Wednesday’s MRI he reminded Lou of what he said to me when we bumped into one another in the hall.  He said, it has to be radiation effect.  “But, not necessarily necrosis?” Lou asked.  “Right,” he said, “because necrosis is permanent and wouldn’t improve like we are seeing on Ty’s scan.  There are all types of side effects people can face years after radiation… Luckily, what happened with Ty is probably recoverable.”  Recoverable.  If it wouldn’t have been so incredibly inappropriate I would have leaped across and kissed him.  That’s a beautiful word that is filled with hope and to hear him use it made my heart skip a beat. 

As I left the hospital tonight, I saw an adorable old man walking in.  He was in a crisp, off-white suit with a pink button down, a fancy cane, and he carried a bouquet of red roses.  “I’m going to be a grandfather in about ten minutes” I heard him declare proudly.  So sweet.  Not everything is bad news in hospitals.  I couldn’t help but thinking about how so much life was going on around me, even though my whole world seems to be at a standstill.  On my way to the Ronald McDonald House there were people all over the streets.  Couples holding hands, young girls and guys spilling out of bars, music blaring.  It occurred to me that it is Saturday night in the city.  I used to be just like those people.  I miss it, but wouldn’t trade it for the world.  I know I said I hate my life… but I only hate it today.   Soon I will be on my way home again with Ty in the backseat, windows down, wind in our hair and smiles on our faces.  

This sucked.  But it was fixed.  Thanks to Ty’s amazing doctors.  Thanks to God. 

Friday, May 18, 2012



Lou took this last night.  Me and my beautiful boy.  I am so in love. 

Ty's emotions are still running high.  He cries so often that my stress level is completely maxed out.  Luckily he is still young enough that he doesn't stay depressed for long, and he isn't fully aware of the impact this latest setback has had on him.  When he gets sad he can often be diverted and he still smiles easily (all I have to do is make a joke about something gross like burps, farts or boogies and he is laughing himself silly).  Unfortunately for me, those diversions usually require physically draining activities on my part, like a trip to the candy store, a supermarket run so Ty can taste-test the grapes himself, or a drive to the Red Rooster for a vanilla cone with rainbow sprinkles that are embedded in every crevice of my backseat. 

I guess on the plus side, I am happy to report that his crying has gotten much stronger.  Much louder.  That means his oral motor skills are improving and his lungs are getting stronger.  His appetite is improving too, but I don't expect that to stick around much longer since he will be starting his Temodar today after several days off the chemo. 

I've been making a lot of shakes using organic baby food and such.  Despite his lack of interest in food over the past two months, Ty still managed to gain a kilo!  He is up to 14 kilos/31 pounds.  He's catching up to Gavin who is weighing in at a whopping 36 pounds these days :)  This is a healthy weight for Ty and I'm finally relieved.  Feeding Ty, making sure he gets proper nutrition, has always been a source of much anxiety.  I am so excited about the recent weight gain.

Over the weekend, Ty and Gavin's preschool will be hosting a family fun day.  I am excited to take him there so he can finally visit with his old teachers and say hello to his classmates.  I think I am more excited for me, too, because I really miss everyone.  I thoroughly enjoyed going to preschool with Ty every week and I fell in love with his teachers and adorable classmates.  We will be sure to take a lot of pictures and post them here.  I expect Ty to be cranky, but I hope he will find some joy in being there, too.  Fingers crossed for a fun-filled weekend. 

TGIF!! XOXO.   



Wednesday, May 16, 2012

Relief and Hope


What a long day we had today.  But I certainly can’t complain because Ty’s MRI was beautiful.  The swelling in the brainstem area is gone.  The lesion in the brainstem area that appeared to be a result of radiation has improved.  The spine is stable with no new evidence of disease.  That means it’s clean, stable, NED.  We are thrilled.

When Lou was reviewing the scan with Ty’s doctor, he asked if he was surprised and whether or not he felt it means Ty may be on his way toward being cured.  I liked his answer.  Always the conservative (as he should be for obvious reasons), Ty’s doctor said that he learned not to be surprised by any feat of Ty Louis Campbell, and that yes, with every clean scan we get closer to the two-year “NED” mark, which is when he begins to breathe a little easier.  We are almost halfway there and he admitted that he never – in a million years – would have imagined he would be having this conversation with Lou.  He said none of his colleagues would have believed it, either.  Ty is amazing.  But you all believe.  And we believe.  Don’t ever stop because it is so powerful.  Now Ty just needs to show him that he will recover much more of his physical strength as well – slowly but surely – because I know our doctor has some very strong doubts about that.  We don't.

I went to bed very early last night.  It was easy to fall asleep with Ty’s arms wrapped around me right after whispering our prayers.  Unfortunately, I woke up countless times throughout the night to look at the clock or administer meds.  At some point in the middle of the night I asked Lou “What do you think about tomorrow?  How do you think the scan will go?”  I wasn’t surprised when he answered because he was either awake or easily roused due to the same stress I was having.  He said he didn’t know.  I told him, “I think the MRI is going to be clean, and I think when they compare it to the one from February 29th, they won’t be able to see any difference that would explain what’s happened to him over the past two months.”  Lou agreed.  He felt the same way and our gut instinct was spot on this time. 

At 5:30 in the morning, we were off and running.  Ty’s scan was scheduled for 8AM, which required a 7AM arrival for bloodwork and anesthesia clearance.  Ty was so brave when he had his mediport accessed.  He barely put up a fight for a change!  He chose me to escort him into the MRI (more often Lou goes with him – especially when he’s getting anesthesia).  I wore the huge blue sterile suit, the surgical hat and booties.  I held him in my arms as they injected him with propofol, as is routine, and when I laid him on the table his eyes were still open but he was completely cross-eyed and unconcious.  It’s scary looking at him that way.  I started tearing up as the team kindly told me to leave. “We’ll take good care of him,” they said.  I kissed his cheek, his hand, his little foot and looked at the ceiling as I left to call on all of his angels that I imagine fill the room while he’s in there.  I cried as I walked back down the halls to meet Lou.  My baby.  My love.  So much at stake every time. 

Then we happily went out to breakfast.  I know it sounds so simple and routine, and to be honest it kinda is.  We have a ritual.  We hold hands.  We stop in at St. Catherine’s and say some prayers.  We go to the coffee shop around the corner for soft boiled eggs and Lou steals some of my delicious cappuccino as I scold him to get his own cup next time.  They call us when Ty is about to wake up so we are there to greet him – the tired and cranky monster.  Then… we wait. 

And wait we did!  Today was excruciating.  We were back on the 9th floor before 10:30 but we didn’t see the doctor until 1:30.  It never takes that long.  I kept imagining that he received the images and was on the phone with the radiologist trying to figure out what was going on.  I was a nervous wreck.  I couldn’t even sit down for the last hour, and I couldn’t stop asking Lou, “What do you think is taking so long?”  Always the voice of reason, he pointed out how incredibly busy the clinic was today.  He also told me that he saw several members of the neuro oncology team dealing with emergency situations.  He was right, that was the only reason why it took so long.  The team was dealing with a number of emergencies and the Campbell’s had to wait for their good news.  We have been on the opposite end of that coin too many times, so in hindsight, the waiting was welcome.

Ty’s scan looked great.  The swelling in the brainstem is gone!  That may be a result of the hyperbaric oxygen therapy, but we’ll never know for sure.  Regardless, we will continue going to the “rocketship” every morning as long as our insurance approves it – which may mean we have hyperbaric treatments well into mid-summer.  We also discussed some new medications to help Ty’s spasticity, and we are adjusting his pain meds so he has more energy throughout the day.  All in all, today was a great day at the hospital. 

Tonight, Lou and I both feel so hopeful.  We are filled with a positive outlook fueled by relief and triumph.  We wouldn’t be here if it wasn’t for your support, and we can’t thank you enough.  God bless and good night.  XOXO.

Tuesday, May 15, 2012

Big Day Tomorrow - bi-monthly MRI

MRI DAY TOMORROW:
It's here again.  Every two months Ty is scheduled for an MRI of the full brain and spine.  I know it doesn't seem like two months have passed because he has had a couple of brain MRI's in between, but Ty's last bi-monthly MRI in March was pretty much the last time he was feeling good.  It's when we made the huge mistake of feeding the trolls by bragging about how great he's doing.  When we were singing from the rooftops about another clean scan and showing off his progress by having him walk across the playroom for his nurses. 

My prayers for tomorrow are coming from the center of my bones because that's as deep as I can visualize my energy.  Lou and I are filled with anxiety.  I can't wait for tomorrow.  I am eager to hear that there are no signs of disease in Ty's brain or spine.  I want to know for sure that we should keep doing what we're doing, even if we don't get the answers we are longing for (meaning, if it's not disease and not necessarily radiation necrosis - what the heck is going on?).  Neither of us expect those answers.  Ty has always suffered consequences of medical anomolies that couldn't be explained with certainty, so why should this be any different?  I just want to know that we are doing the right thing by forcing Ty into the oxygen chamber every morning - kicking and screaming - and then following up with aggressive PT and OT that leaves him exhausted.  We are in this fight 100% and we are pushing Ty to keep at it day by day.  We need this MRI to reassure us that this is the right direction for him - at least for the next six weeks before the scanxiety starts setting in again. 

It feels like my shoulders are stiffly perched up above my neck as if I was just stabbed in the back.  There is a steady, throbbing pain just above my right ear - probably from clenching my jaw for days on end.  My clothes are uncomfortable because my skin is crawling.  Instead of my usual insomnia, I wish I could crawl back into bed on this rainy day and sleep through this dreadful feeling until it's time to leave for Sloan Kettering in the morning.  If given the chance, I know I would be able to do it... I can barely keep my eyes open as it is right now.  Please, please, no more cancer.  May it never, ever, ever, ever, ever come back.  May Ty navigate his way through a miraculous recovery and be restored to his full physical health. 



THREE IS FUN
On the flip side of this crazy beautiful life, I am thoroughly enjoying three years old.  Gavin is just such a character and he makes me laugh every day.  He is so different from Ty.  Not just because Ty's three's were robbed from us due to hospitalizations, infections, chemo and radiation; but also because even when Ty had his good days, his sense of humor was always different.  Ty has always been verbally funny.  He likes jokes and teasing.  He likes to be entertained by others. Gavin is physically funny and much more independent.  He likes to tackle, make funny faces, hide in boxes.  This morning I found my cell phone in his tent.  He is simply unable to climb into bed with me and snuggle like Ty does, he has to go balls-out crazy under the blankets every. single. time.  Which is why we may keep the big goon in his crib until he's five :) 


The picture above was taken a few weeks ago when Ty was still doing okay. I see Ty in the corner of the photo sitting up straight and holding his hands over his eyes because there must be something scary on TV (and by scary, I mean the "door mouse" on Team UmiZoomi, or "La Bruja" on Dora the Explorer).  Now Ty can only hide by closing his eyes.  It's sad.  Lou and I were with him at Blythedale the other day and he was teasing us by closing and opening his eyes.  "Where's Ty?" we would pretend.  He would smile big and then open his eyes so we could act surprised and say "Oh!  There he is!"  I know he doesn't really think he is disappearing and reappearing, but goofing around like that are the things that makes Ty laugh.   

Ty calls his little brother a "lunatic" and it makes them both laugh.  I love how they love each other.  Ty woke up feeling very sad today.  He was crying and crying.  He was in pain.  Gavin crept over to see Ty and he was caressing his legs and feet gently.  He was saying "Oh, Ty."  It was beautiful and gut-wrenching.  My Gavin may be a crazy little man, but he has a heart of gold.


MY MELTDOWN
Ty has been very, very emotional.  And, he has been in a lot of pain.  He is very physically uncomfortable because of the muscle spasms and tightness in his neck and his limbs.  He flinches and cries out every time I move him in the slightest.  After several days of this, I finally broke down yesterday.  Here's why.

We took a trip to the candy store for the first time in a while.  Several weeks ago, one of Ty's amazing teachers made him a book filled with photos from "CandyWorld" at the Danbury mall.  Yesterday I decided to surpise Ty after therapy with his first trip to the real Candy World.  It was exhausting but it made him very, very happy.  We spent almost 1/2 hour in that tiny store just marveling over the candy :)  At the mall I had to use the fold-up wheelchair for the first time, but it doesn't provide enough head support so I had to hold his head with one hand while steering with the other hand.  It was my first time putting Ty in a wheelchair outside of the hospital and I could barely hold back the tears from the constant stares.  I don't think I'll ever get used to that. I felt so protective, like a lioness, and I just wanted to yell at everyone.

When we got back to the car I was simply spent.  Lifting Ty from the chair back into his carseat - and I was sooo careful - resulted in him screaming in my ear for the hundreth time that day.  In all honesty, I wanted to yell at him.  I wanted to tell him to "shut up!"  I didn't, but just feeling that way made me feel so tremendously guilty and weak.  I got in the front seat and just started crying even louder than him.  I started yelling at him how sorry I am that I can't fix it.  I told him that I wish I could be a better mommy, that I wish I could fix it so it didn't hurt anymore, that I wish I could fix everything.  I was tired and emotional.  I am embarassed of my behavior but I'm only human. 

I can only compare it to when my boys were babies.  When I was a sleep deprived mom to newborns and at times I just wanted to yell at them to stop crying.  I think most mom's out there can relate to these feelings.  These are not proud moments, but it is only natural to be vulnerable sometimes.  Parenting is exhausting.     

SICK HOAX TAKING ADVANTAGE OF CANCER KIDS
Some people are just sick in the head.  That's a phrase I can hear my Dad saying, "He's sick in the head, I tell ya, sick in the head."  I was recently notified about a facebook page that was created where a grandmother and mother were asking for money to help them care for their three-year old girl who was recently diagnosed with cancer.  I was told that it was suspected to be a hoax and asked to say something about it on Ty's pages to help speak out against them.  At the time, I didn't have the energy to look into it.  I didn't want to be an advocate against scumbags that day.

Then it happened again yesterday.  I saw messages all over facebook about a cancer mom who had just been killed in a car accident.  Warrior Eli's family had maintained a caringbridge for over a year.  They had posted photos of a bald-headed "Eli" and his siblings.  They set up a donation page that was supposed to be redirected to Alex's Lemonade Stand - a highly reputable foundation that funds children's cancer research.  Well, it was all a hoax.  How disgusting.  For the first time since Ty got sick, I became disgusted with how cruel people can be.  I'm happy to say that my entire cancer experience has been otherwise filled with love and prayers from friends, family and strangers around the world.  This story is discouraging, but won't change how grateful I am for the real community who has come together for these kids.

Sunday, May 13, 2012

I love being a mom - but I don't necessarily love mother's day

I absolutely love being a mom.  Ty and Gavin are my whole world.  And I have been trying to enjoy them as much as possible since we got home from the hospital.  On Friday I was trying to figure out how long we've been in this exhausting routine at home (meds every four hours, waking up for oxygen treatments at 5:30AM, going to school/therapy every day, driving.. driving.. and more driving..).  Can you believe it's only one week down?  One week!  It feels like an eternity.  But then again, all of this cancer stuff feels like it's been an eternity. 

I decided that I don't necessarily love Mother's Day.  It's very nice and very important, but I do find it a little sad despite my wonderful husband's efforts to make it the greatest, most relaxing day for me.  I found myself thinking mostly about my cousin Mary, whose daughter died after only 90 days on this earth.  I was worried about my own loving, amazing mom, because this is her first Mother's Day without grandma.  I thought about my friends how lost their moms, especially Keri and Kelly, and want to give them huge hugs today.  I thought about all the moms I have come to meet that are living their lives caring for their sick children.  And I thought about one very special friend who had an abusive mom who didn't know how to be a mother.  For all of these reasons and all of these loved ones of mine... I decided I don't necessarily love Mother's Day.  It can be a hard day for a lot of people.

I'm not complaining.  Please don't get me wrong.  Today was a great day for me because it was a great day for Ty.  That is how everything in my life is measured.  Secondary to that, it was a great day for me because Lou made it that way. He pampered me with a quiet, indulgent breakfast.  I was able to have as much alone time I needed at any time during the day, and I took advantage.  He is the best daddy and husband in the world. 

My mom and dad came to visit all day yesterday and it was so nice to have them here.  We celebrated an early mother's day and a belated birthday for my Dad (who's birthday was May 9).  Ty had a terrible day, though, and I was very worried about him.  He was very uncomfortable and cried often yesterday.  I second guessing whether we made the right decision to taper his pain meds all day.  I really wish he was feeling better so he could have enjoyed more of his time with Grandma and Pop-pop.

Today, however, in honor of Mother's Day, he was the opposite of yesterday.  He looked great and I think he felt great.  He smiled often, he was eager to show off how strong he's getting, and he even allowed us to go for a walk through the neighborhood as a family.  The weather was beautiful and he was willing to go in his stroller (not something he allows us to do often).  I was so grateful for that time outside.  It awakened my insides a bit :)

Just two quick stories before I call it a night (it's time for meds).
During the outpatient program at Blythedale, Ty and I often have downtime when the other kids in his class are napping and we are waiting for his next therapy.  I take him to the cafeteria, or the family room to watch some TV, but on Friday the weather was beautiful so I convinced him to take a short walk outside in his wheelchair.  As we enjoyed Spring, Ty said to me, "look Mama, look at all the clouds!  That one wook wike a pogo stick! And, that one wook wike a BEAR!"  I didn't see it, but of course I pretended to.  It was just so sweet. A pogo stick?  How does he even know what that is?

I've been taking Gavin outside to burn off some energy whenever I can, and I am pleased to report that he caught onto the magic that is found in dandelions.  He simple melts my hearts by picking the yellow flowers that have sprouted all over our lawn and saying "Here, Mommy, vis one por you!"  Then, he takes a deep breath and blows on the ones that have sprouted windborne seeds.  We lost so much time with Gavin I'm not even sure where he learned about that trick, but I'm glad he knows it.  Makes me so happy and sad at the same time seeing how much he is growing up yet wondering when and where he's learning some things.  I love him so much. 

Goodnight to all of the amazing mothers and grandmothers out there.  I hope your day was wonderful.  Before signing off, I am attaching a cute comic strip in honor of the flip side of being a mommy.  We all take the good with the bad, right?  Just grin and bear it because we love these little people too much for words. 


Thursday, May 10, 2012

STRONGER

This video is my new favorite.  I posted it all over Facebook, too.  I hope you like it :)

STRONGER - Seattle Children's Hospital

Wednesday, May 9, 2012

Better today

Ty woke up really sweet and happy this morning.  He slept well last night.  Lou and I got a couple of hours of peace and quiet last night.  Everything seems so much better now.

I am happy to say that we began to taper his pain medication today.  Instead of every four hours, we stretched it out to every six.  After a few days at this level, we will continue cutting down the dose every few days.  I hope and pray we can wean him off his pain medication, but it's going to be a very slow process because we don't want him to be uncomfortable.  I just don't like the idea of my four-year-old on daily oxycodone or morphine anymore.  I want him to get some energy back so he can withstand more physical therapy.   

His nagging head pain is so much better, but now he suffers from pain related to muscle spasms and increased tone.  Especially in his neck, making it difficult to turn his head or sit comfortably.  We are seeing improvement in this area, though, and it is very promising.  He is in much better shape than he was a couple of weeks ago, and being home is definitely helping on so many levels. 

It has been really hard at home, but it sure beats being in the hospital.  Most importantly, Gavin has his family back and we have him back.  Ty is happier overall.  For all he goes through every single day, he smiles easily and he just wants to try and have fun through it all.

Yesterday he asked me to play "downstairs."  We have a playroom in our basement but he never used to play down there because it's cold and he prefers to be upstairs in the kitchen/den area with me.  Of course, I took him downstairs at his request and he picked out games, played with his toy kitchen, did some art on his easel - all things that were very difficult for me to do with him because I had to balance him on my knee, hold up his head, keep his back straight and pretend he was pushing buttons, picking up toys, moving game pieces, etc., but it was important.  I really think he asked to do all of these things because he wanted to know that he still can.  I thank God that he is only four years old and too young to realize his limits.  He smiled when I held the crayon to his hand and dragged it across the page because he felt like he was coloring again.  He laughed when I took his hand in mine and we punched the buttons on his toy cash register.  He yelled "I win" when I helped him fling a monkey in the tree when we played "Jumpin' Monkeys."  He needed some validation that he can still do all that stuff, and I hope I gave it to him yesterday. 

The hardest part about readjusting to life at home is the fact that Ty requires 100% attention 100% of the time.  If I am not sitting next to him feeding him tiny pieces of food, turning the pages of a book or manipulating his toys in front of him, then I am preparing his medications.  It's non-stop and it's really hard.  As soon as I try to wash some dishes, I hear him calling for me.  Poor kid.  Of course, the dishes can wait but waking up to a sink full only adds more stress.  So, I stay up late and try to stay on top of everything.  Some nights I'm getting as little as three hours of sleep.  I need to work on that!  Hopefully the revised medication scheduled will buy us a bit more time to ourselves.  Eventually all of this will become routine again.  We just need to adjust and we are getting there.   

Monday, May 7, 2012

Trying to keep my head up

Being home has been nothing short of depressing.  I wish with all my heart that I could be more positive, but it's the truth.  It's been really hard watching Ty like this.  Facing the new reality, yet again, that his life is so incredibly messed up.  He is so sad, too.  He cries all the time, but he also smiles easily.  That's just Ty.  He will belly laugh at the silliest joke and the most meager attempts at being funny, but he may also break down into hysterics at any given moment.  It's been tough.  I can't imagine how he must feel, being back home surrounded by all of his favorite things that he can't play with anymore. 

Anything but cancer, right?  Well. Lou and I certainly don't say that anymore.  It was one year ago yesterday that Ty's MRI confirmed two new lesions in his cerebellum that were growing rapidly.  That was one of a dozen most difficult days we faced during this journey, but learning about his radiation necrosis was even more difficult.  At least there are proven treatment options for cancer.  The brainstem necrosis diagnosis has been a more difficult pill to swallow.  The idea that he is forever paralyzed is not even something that I will entertain.  The thought of necrosis breeding necrosis and ultimately leading to his loss is not even a realistic possibility in my mind. I still have so much hope that Ty will recover 100% because, why not?  What's the alternative... to despair?  That's not going to help anyone.

There are small signs of improvement with every day.  Today I can note two things that I got excited about.  First, he was chewing a piece of candy on the right side of his mouth.  He hasn't chewed a piece of food on that side of his mouth in over a year, so it was very strange and exciting to witness.  His oral motor must be getting stronger!  At therapy today I also noticed that he is able to rest his hands up on the tray that attaches to his wheelchair.  The last time he was in that chair (thursday) we ordered him some bolsters that would hold his arms in place because they kept sliding down, and today we realized we probably won't even need them.  Oh, and yesterday he was drinking juice again.  For the first time in months he expressed that he was thirsty and interested in drinking something instead of being forced.  He is able to use a straw really well, again, and that is amazing. 

Hope is so healthy.  It gets me through each and every day. Whoever made up the phrase "false hope" anyway?  That's an oxymoron. 

 

Friday, May 4, 2012

hot lava


When I saw this I smiled at the memories because, of course, I played Hot LavaDon't Touch the Ground and SHARK! as a kid - jumping from couch to couch with my friends.  Then I cried a river.  This is all I want for Ty.  A fun childhood.  In his four years, he has smiled through the pain and we have tried to make his life as special as possible, but I certainly wouldn't say he's had a fun childhood.  He has been robbed of his childhood altogether and forced to be brave.  To grow up way too soon.  To endure daily suffering. 

Whan drawing his blood yesterday, the nurse felt terrible about sticking him.  She said something like, "I'm sorry, I understand, I still get very upset whenever I have to get a needle and I'm fifty!"  I would guess that most adults have had less needles in their lifetime than my four-year-old angel baby.  I know I have.  Poor Ty has had to grow up so much in his short life. 

Ty is in the oxygen chamber right now, he didn't want to go this morning and he gave us all a really tough time about it.  When he woke up he whispered "I want to go home now," and I said "Yeah, let's go!"  I should have been more careful about the way I worded it because when we got in the car he went into hysterics when I explained that first he needs his "rocketship" treatment and then we can go straight home.  I can't wait to update you all on how he's doing once we settle into the best place in the world.  H.O.M.E.  I am very excited to walk in that door and drop my bags to the floor. 

May is Brain Tumor Awareness Month.  In my research, I came across a presentation recently made to Congress, and I am pasting an excerpt below.  Click Here if you are interested in the entire speech and some of the ideas presented for addressing the various issues pertaining to research.  It is a convincing read and I hope Congress thought so, too.  It was written and presented by Nancy F. Goodman, Founder of Kids v Cancer and forever Jacob's mom.  Her story is all too familiar to me and so many other moms I know...



My son, Jacob, was your typical, wonderful eight-year old boy when he was first diagnosed: a sweet kid, a good brother, an able student, an enthusiastic athlete, and a passionate rock-and-roll keyboard player and vocalist. After some unexplained morning headaches and nausea, we were told that Jacob had medulloblastoma, a form of pediatric brain cancer. Jacob endured several surgeries, six weeks of daily radiation and many difficult chemotherapy protocols. He suffered severe neurological and cognitive impairments, including an inability to speak or, for a time, move. He was wheelchair bound, he lost gross and fine motor skills, he experienced significant memory deficits. Jacob had unmanaged pain, anorexia, nausea, baldness and multiple infections. He was hospitalized for months at a time. And still, unbelievably, he never complained and just focused on his friends, his family, and attending school as much as he could. Jacob died a year at age 10.

During our hard-fought efforts to save our son, we came to realize that Jacob and children with pediatric cancer are at a serious disadvantage when it comes to research for treatments and a cure.

All cancers are terrible and impose tremendous costs on the diagnosed. But childhood cancers are in a class all their own. The loss of a child to cancer is among the worst tragedies a family and a community can endure, the pain magnified by the knowledge that such an early death represents the loss of an entire lifetime's hopes, dreams, and experiences.

The impact of pediatric cancers on families and our society is devastating. Each year about 13,500 children are diagnosed with cancer in the United States, and for 25% of them, that diagnosis is fatal. Though some childhood cancers, such as leukemia, have seen significant improvements in survival rates, others have witnessed no improvements in decades. Many pediatric cancers, including Jacob's disseminated medulloblastoma are terminal upon progression or recurrence. Others are terminal at diagnosis.

More children die of cancer every year than the terrible terrorist attacks on our country just ten years ago. Cancer kills more children than AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies combined. When a child dies of cancer, that child loses almost 70 years of life. Jacob was 10 when he died. He missed dating, graduating high school, going to college, finding a first job, getting married, having children. While we have made significant progress in addressing certain cancers, these numbers are still too high for any child.

For those children fortunate to survive their diagnosis, the vast majority face chronic illnesses and life-long impairments, including secondary cancers, impaired cognitive and social abilities, heart damage, lung damage, infertility and alternations in growth and development. In many cases, the toxic treatments themselves are the cause of life-long challenges. Childhood cancer treatments tend to be at relatively higher doses than adult treatments, and with those higher doses come more serious long-term effects. To put this in perspective, children with Jacob's diagnosis who receive radiation to their brain before age 8 may have a difficult time ever counting money and doing multiplication and division. Children who receive cranial radiation before age 5 may never learn to read or tell time. And babies who receive cranial radiation may never learn to talk. Had Jacob survived, he probably would not have been able to stay in his mainstream school, go to college, or live independently.

The image of a bald, frail child in a hospital gown on a fundraising brochure strikes a blow deep into the soul of a community that values and cares for its children, and for decades Americans have been opening their hearts-and their wallets-to support cancer research. But what people don't know is how few dollars of those dollars go to fight pediatric cancers and how much the pediatric cancer research community needs funds, new drugs and tissue to make real progress.

Much more needs to be done. It is time to shed light on the ways that we, as a country, are failing our children. Policy makers, regulators, health-care professionals, and parents must be made aware of the crisis that faces every new generation.


Thursday, May 3, 2012

> 36 hours - but who's counting

Lou spent the day with Ty today, and I had a much needed day at home to get things in order for Ty's big arrival!!  We will be doing our normal routine at the hospital tomorrow (oxygen at 8AM, school at 10:30, lunch at 11:30, PT and OT at 1:30, school again at 2:30 and speech at 3PM) then we have just one more night before we discharge upon leaving for oxygen treatment Friday morning.  Needless to say, I am very, very excited.  I have so much hope that being home will accelerate Ty's improvement because of all the good it will do him psychologically. 

Ty's head pain is really getting better.  Lou and I believe that he is virtually headache free these days with the exception of neck pain and muscle spasms.  We are planning on starting a very slow taper on the pain meds so he can get back to normal over time.  The only two things that have us worried now is (1) he has vomited about once a day for the past few days, and (2) at times he is still sweating profusely which is something that used to happen when he had tumor burden activating those signals from the brainstem area.  The nausea may be due to the fact that we just started his daily chemo again last week.  It may also be because his gag reflex is so weak (just like everything else).  I just wish I knew what was going on in that head of his - literally.

Otherwise, Lou says they had a really great day together.  I didn't get back until after Ty was sleeping this evening, but Lou posted this peaceful picture on Facebook.  Earlier today he interrupted Daddy while he was on the phone just to tell him "I lub lying in bed wit you."  Sweet!



I am too tired to share much more tonight, but I did want to make sure that i posted something about May being Brain Tumor Awareness month.  Well, it is, so please be aware and help to make others aware :)  After all, there are 130 different types of brain tumors.  That certainly makes diagnosis and treatment very difficult.  Brain tumors are so brutal because the smallest change can cause the most catastrophic results.  Paralysis, loss of vision, crossed eyes, intracranial pressure and a decline in vital signs.  It's horrifying.  When are we going to find a cure for cancer? 
Thank you for all of your love and support. 
Cindy