Saturday, April 30, 2011

Dodged a bullet

Ty's MRI went well today!  His spine shows no signs of additional disease and that is obviously a huge relief.  In a nutshell, today's MRI just bought us another week of what has proven to be a rather pleasant uncertainty.   We still have to scan his brain again to see what is happening with what his doctor's believe to be new tumors in his cerebellum, but Lou and I (and all of you) are just praying that they are wrong… that those lesions are not malignant and that whatever showed up on Ty's scans last Thursday were some kind of fluke. 

When we were waiting for the results, Ty asked me to go downstairs and get him a turkey sandwich.  Waiting in a line in the hospital cafeteria caused such anxiety that I was afraid I was going to faint right there.  It was such a horrible feeling, getting so worked up like that.  And it stayed with me until the doctor's assistant called us into the room.  "Here we go," I thought.  "Remember to breathe."

When we first walked in, one of his doctor's was standing eating some snacks, while Ty's primary doctor was looking at the scans on the computer.  He didn't turn around to look us in the eyes right away.  So, my crazy mind thinks something like this…"it's bad, he can't even look at us.  But wait, if the other guy is comfortable enough to have snacks, how bad can it be?  And, if it is bad, how dare he be eating snacks so casually!!  He wouldn't dare do that… don't they realize how serious this is?"

So, the first thing he does when he gets up from his computer is start small talk.  I'm thinking, "small talk can only mean one thing, he is buying time before delivering the bad news…or, maybe he is so casual because all is fine and he is happy?"  I was at war with myself over the course of probably one minute but it felt like hours.  Thank you, Lou, for asking the direct question after what seemed like an absolute eternity of me sweating and over-analyzing his every eye movement and hand gesture.  "So, is it good or bad?" 

"Oh, of course, yes, yes, the spine looks okay."  Okay?  Okay meaning what?  Okay, like there's only a little cancer?  Or, okay like there is no cancer?  It was okay meaning no cancer.  The disease did not spread into Ty's spinal cord as his doctor's feared.  We had the green light to discuss a treatment plan, which includes chemotherapy that will begin in two to three weeks. 

But, before we completely buy into "next steps" we need another scan of the brain, and that is scheduled for next Friday.  I am even more nervous about that one, but I will ride this wave of relief for the next six days to get me through. 

In the meantime, I just wanted to let you all know that we are doing great, and that Ty is better than ever.  He even went through with today's MRI WITHOUT ANESTHESIA for the first time.  Can you imagine?  Anyone who has ever been in an MRI room knows about the crazy magnet swishing sound, followed by popping sounds, horrendous knocking sounds, and the crazy alarm sounds that go off the entire time.  Ty had to promise to hold still the entire time, which he did like a champ.  It is a huge scary machine and although I stayed in the room with him we couldn't talk to each other because it's so loud.  All I could reach was his big toe while he was in the machine, so I held onto that so he would know I was there for the entire time - which lasted over an HOUR!!  It was torture for me, but he was amazing.  So incredibly brave.  I love him so much.

Thank you everyone, for loving Ty and praying for him.  Thank you, God!! 

PS - Lou wanted me to designate this post "More Great Things About Lou - PART 2" but he was overruled.  I had to remind him again that this is my blog.  :)

Thursday, April 28, 2011

MRI tomorrow - please pray for Ty

Tonight is very stressful and scary.  It always is before a scan.  I actually have difficulty breathing normal just knowing that Ty has an MRI scheduled in the morning. 

The scan is only of Ty's spine, we won't be following up with another brain scan for at least another week or so.  The doctor's ordered the spinal scan simply to prove that they are right, that Ty's cancer is spreading.  Lou and I agreed to the scan only to prove them wrong.  Please God, prove them wrong this time and every time.  Much thanks and love to you all.  I will share updates as soon as I can. 

Wednesday, April 27, 2011

This is dedicated to the one I love...

This is for the other man in my life (no, not Gavin :) ).  Lou.  My rock.  My soulmate. The best father in the world. 

I first created this blog to keep everyone up to date on Ty's medical progress, but it very quickly became an outlet for me to share my thoughts and details about my day-to-day life since it has been turned around upside-down.  It has become a running joke in my household because Lou feels like the blog barely sheds light on how involved Ty's Daddy is every step of the way.  In fact, I often tease Lou and call the blog the "cancer mom chronicles."  Lou certainly deserves more credit than I give him, and I am glad he has such a great sense of humor about it.  I am certainly not going through this alone.   

All kidding aside, I couldn't imagine going through this with any other man on earth.  He couldn't be more supportive to me or to Ty.  He is an amazing father and husband, and I'm sorry that I don't use "we" often enough during my daily ramblings.  Lou, I love you more than ever.  Thank you for being you.


 

Tuesday, April 26, 2011

In God's Hands...

...it always has been.  But I will continue to do everything as Ty's Mommy to take care of him as best I can.  Sometimes I still feel so immature and clueless when it comes to being a mom.  Like, I wonder why God felt I was even deserving of these two amazing gifts.  What do I do with them?  What if I mess up?  Especially now, when I am in a panic over Ty's medicine or when I forget to bring a bucket to the supermarket with us and he gets sick in my hand.  I swear, if it wasn't for the emotional outlet this blog provides me and the amazing reinforcement and encouragement I get from everyone I think my insecurities would get the best of me some days.  Instead, you keep me so strong.  And he keeps me strong. 

We had a rough day today because Ty was very emotional and he just kept crying on and off all day.  I asked him if I could just hold him for a while and see if that would help him to settle down.  As I cradled him (with Dora the Explorer in the background), I let my mind free for a few minutes and I started thinking about a beautiful little boy, Tanner, who we shared a room with before Ty's very first surgery.  He passed away early yesterday morning at home in bed with his Mom and Dad holding his hands.  When I read the news last night, Lou and I cried ouloud in absolute hysterics. I hadn't otherwise allowed myself to think about it today. 

Ty looked up at me when I was crying, he looked concerned for a second, and then he flashed me the biggest grin you've ever seen.  I said "why are you smiling, are you trying to make me feel better?"  He said, "yes, I'm being so cute."  Oh, how he can melt my heart.  And, to top it off, he waited a few minutes, then he raised his strong hand up to my face and he said "I wub you, Mommy.  Why you cwying?" 

I thought about it for a second and I answered, "I'm just crying because I really hate cancer."  
"Oh.  Me too," he said.
"So, what should we do?" I asked
"Beat that up!" he answered.

How perfect.  That simple conversation with my three-year old was just what I needed to snap me out of it. 

My heart will forever break for Tanner and his family, but his parents inspire me to keep my fighting passion and faith in God thriving.  On top of Tanner earning his angel wings, I learned of another three-year old boy who we shared a room with who received terrible news on Friday after a scan.  I also learned of a friend's sister, a beautiful young woman, being sent home to hospice.  Please continue to help me in sharing Ty's story in an effort to spread pediatric cancer awareness. 

Cancer... you disgust me.  You are a vile, purely evil disease and you can't win.  Even when you take the lives of pure beauty, you lose because you die too.  How dare you even touch God's work!!


Monday, April 25, 2011

Happy

While we are forced to simply wait and see what happens with Ty, I am embracing the uncertainty and maintaining a positive outlook.  And, I'm praying as hard as ever.

In the meantime, we had a great weekend.  Gavin's birthday celebration on Saturday was loads of fun with all of our family and lots of cake... followed by a beautiful Easter Sunday filled with easter egg hunts, overflowing baskets, delicious meals, family and love.  The photos/video below kinda says it all. 

GAVIN FINDS HIS FIRST EGG
TY FINDS AN EGG

GAVIN's FIRST "PEEP"
HAPPY TY

GIANT STEAK FOR TY ON EASTER (OF COURSE)

BEST WISHES FROM TY
video

Saturday, April 23, 2011

Deja Vu

The results from Ty's MRI on Thursday are frightening.  I needed a couple of days to come to terms with the news before posting, so I could explain what we were told and how we have decided to interpret everything. I needed to take some time to breathe again.

The radiation is working extremely well on attacking Ty's tumor at the brainstem, but the radiologist discovered two new lesions in his cerebellum.  The final MRI report reads that they appear to be growing very rapidly and that they are indicative of lepto-meningeal disease.  If that proves to be true, our doctors say a cure is no longer likely but they provided us with several alternative treatments to prolong life comfortably.

Let me tell you what we think of that news.  Unacceptable!  I was in a complete panic for a few hours after leaving the hospital (we were delivered the news just minutes before discharge on Thursday evening), however I settled down after a couple of hours and I was hit with such a powerful wave of serene calm, that I just know everything is going to be alright.  We have been delivered this news before, and they have been wrong every time.  I refuse to believe it this time.  I won't let them do this to me again!  I simply can't accept that cancer is spreading in my baby's brain while he is simultaneously undergoing radiation therapy, it just doesn't make sense.  All I have to do is watch him eating and coloring to see that he is getting better.  He is thriving!

Thursday was supposed to be a great day for us.  Ty completed his RT in the morning and we were so proud of him.  During his MRI I ran some last minute errands to prepare for Easter, and when we returned his doctor told us everything looked good but he wanted to wait for the final report prior to discharge.  He mentioned the new lesion, but he said he was sure it was nothing to worry about... that it looked like an old clot or potentially some disease that was eradicated during radiation, but he wasn't concerned at all. 
All day we looked forward to our celebration dinner together, we were so happy.  Of course, during the depressing ride home we debated cancelling our plans, but after talking through everything and coming to terms with the news that was delivered atthe end of the day we decided to be defiant.  We decided that the MRI remains inconclusive and we will not let this impossible guessing game sink our spirits.

I am not naive - I know the extent of how serious Ty's cancer is - but I decided to live in limbo until future tests prove something different.  Yesterday was Gavin's birthday, tomorrow is Easter... I am going to enjoy these days with every bone in my body.  In the meantime, I will be channeling all of your love and strength during these days of uncertainty.  We will schedule a follow up scan to look into this further toward the end of next week (probably Friday) and I will be sure to keep you all posted every step of the way.

HAPPY BIRTHDAY GAVIN
Gavin is two!  He embraced his new age by acting like a complete crazy baby all day yesterday and it was very amusing.  Today we will have all of his cousins over to celebrate with a monster-themed birthday party and I can't wait to share some pictures with you all. 

Ty had a very hard time accepting that it wasn't his birthday, too, so we are allowing him to celebrate his half-birthday at the same time (he turned 3 1/2 on April 4th) and we baked him 1/2 of a cake.  The things you have to do to appease a three-year old!  Gavin was a beautiful baby.  I can't believe he is getting so big and so fast.  So much has happened in our lives since the day he was born, he is so resilient!  He's amazing. 


XOXO from Gavin, Ty and the rest of the Campbell Family.

Wednesday, April 20, 2011

Goo-nite ev-weebody, I wub you

Nothing new to report tonight because we weren't able to coordinate Ty's MRI with anesthesia today.  Instead he will be getting his "picture taken" tomorrow morning immediately following his final radiation treatment.  As always, Lou and I are extremely anxious to see the results.  We will post an update later tomorrow when we know more.

In the meantime, Ty is feeling much better today.  He improved in leaps and bounds over the last 24 hours.  In fact, tonight he ate half a NY strip steak, a hot dog, grapes and cashews for dinner.  He is a force to be reckoned with.  My phone stinks, so the volume on the attached video is very low, but he is saying "goo-nite ev-wee body, I wub you!"  We love you, too.  Goodnight. 

video

STOP... REWIND

Insert the sound of a record player scratching backwards, or a screeching car coming to a halt.  When I posted yesterday morning, we were waiting for Ty's second-to-last radiation treatment.  I mentioned that aside from an episode of headpain the night before, he was doing great.  Fast forward ten minutes... I walked into the treatment room with Ty and the pediatric anesthesiologist proceeded to ask me the usual... if he had any food or drink (of course not) and if he had developed any new symptoms such as coughing or vomiting.  "No, in fact he's doing really great," I said, and at that very moment Ty chose to start throwing up. 

Radiation had to be cancelled yesterday, so today is NOT our last day.  If all goes as planned, we tacked on the extra day and will finish up tomorrow instead.  To say we are disappointed, exhausted and depressed is an understatement.  Not so much because of the extra day, but because of what has gone on in the last 24 hours since the cancellation. 

Even though he got sick, Ty was still in good spirits so we decided to take advantage of our time and go to his scheduled appointment for occupational therapy.  When I tried to give him his oral meds while in the waiting room, Ty threw up again.  It's always a challenge when that happens because it's a tough call whether or not I should repeat the doses.  Ty was a real trooper and he still participated in OT willingly.  He played a few games, cut and pasted shapes... his motor skills are improving dramatically, but even his therapist agreed that he wasn't himself and we cut it short after 1/2 hour. 

On our way home, the vomiting got worse and head pain set in.  The rest of the day was nothing short of torture.  Imagine hearing your child fall from a tree and scream out in pain with a broken arm.  Now, imagine hearing that scream over and over and over again throughout the day.  Imagine your child asking you "what can you do to make my head pain go away?" when the answer is nothing.  I tried to administer pain meds and anti-nausea meds, but he couldn't keep down a single drop.  He started vomiting 3 - 5 times an hour!  Lou and I watched closely and felt very strongly that his infection was rearing it's ugly head again.  I called the hospital, explained the symptoms, and they didn't necessarily agree - no surprise there.  They felt we would be okay staying home and we should see the team after our radiation appointment tomorrow (which is now today).

"F" that!  After hours on end watching him suffer, we jumped in the car and went off to urgent care.  As you know from my previous complaints, there's nothing urgent about urgent care.  We were there from 8PM until 1AM when they finally determined that yes, maybe this is an infection, maybe he should be admitted to the floor.  So frustrating!  We are beyond tired. 

Thanks to IV pain and anti-nausea meds, Ty's RT went off without a hitch this morning.  His neurosurgery team was in this morning to discuss next steps, and we are waiting on the results from several cultures to see what is going on with my poor baby.  He did have a CT scan last night, and there are a few questionable results, so we may be following up with an MRI this afternoon.  Let the "scanticipation" begin!  I will be sure to keep you all posted.  Thank you for all of your love.  XOXO from Ty. 

In the meantime, Gavin is having fun with Aunt Debi and it looks like he found Ty's collection of blue lollipops.  I'm glad he is none the wiser and still having a ball when we are stuck in the hospital.  He is such a character :)  Always happy and goofing around.  I love him so much. 

Tuesday, April 19, 2011

Happy Birthday Jackson

Jackson Bloom just turned six.  In lieu of birthday presents, he asked his friends to make a donation in honor of Ty Campbell.  In the eyes of any other six-year old I know, the world begins and ends with toys; and nothing is better than birthdays and Christmas for that very reason.  Jackson, you are one of a kind. Every day I am surprised by how caring and good people are, even those who are just six years old.  Thank you for being such an amazing kid.

Be Bold.  Be Bald. 
Speaking of amazing, I've been meaning to mention the slew of events we have been looped in on in support of St. Baldricks.  We have had several people reach out, many of whom we've never met before and one boy as young as nine, who shaved their heads bald in honor of Ty to support pediatric cancer research.  St. Baldricks is a great organization and I encourage you to visit the website if you are looking for some inspiration this morning.  http://www.stbaldricks.org/

Mmmmm…
I am still full from my amazing dinner last night.  I am so sorry I wasn't home to meet our new neighbor who delivered the meal (homemade enchiladas!) but I wanted to take this opportunity to thank her and the dozens of other neighbors who have provided my family with home cooked meals and groceries.  Our stays at the hospital have been brutal lately, and I don't know what we would have done without you all (well, we would have survived, but it would have been far from healthy or delicious).  Beef stew, lasagnas, baked ziti, roasted chicken, Spanish rice, I could go on and on… thank you!!

Tomorrow is our last day of radiation therapy.  RT has been working such wonders on Ty that we are afraid to see it come to an end.  However, we are encouraged knowing that the effects of radiation peak six weeks and even up to three months after therapy is completed, so we expect his improvement to continue.  With the exception of a terrible headache last night, our little fighter is doing great! 

Monday, April 18, 2011

Countdown 3...2...1

We were discharged from the hospital in time to enjoy the tailend of the weekend, thank God.  We caught up on some sleep, and we're ready to tackle our last week of radiation.  We have three more days, and we are already in the waiting room ready to finish with day one.  This is Ty waiting patiently in his stroller for his "teetmee" (treatment).  I use the word patiently with much poetic license, because I'm sure most of the people that are sharing this waiting room would think the opposite, but I have seen much worse :)


There's a lot of emotions going on inside that little head of his, and he just doesn't know how to express himself beyond crying out.  Not to mention how funky all of his meds must make him feel.  He is still on a low dose of steroids, causing his "roid rage" to kick in several times a day.  I've weened him from 10 milligrams of morphine every six hours (that's the largest dose he has EVER been prescribed) down to .5 milligrams over the course of the last two weeks, so he may be having some withdrawal issues.  And, due to the misfortunes he faced over the course of the weekends, the team is playing around with his antibiotics again.  So, it can be frustrating at times when I can't figure out what is causing him to cry so much, or act out.  On top of everything, I can only imagine how scared and insecure he still feels when we are dragged in and out of the hospital so much.  And, how frustrating it must for him to be feeling better, but still unable to do the things he wants to do physically. 

Ty often says "I don't know what's wong wit me" and I try to explain to him that he is feeling this way for a lot of reasons, but that the most important thing to focus on is that he is beating the cancer up and getting bedda.  He really is improving with every single day.  I wish you all could have seen how much he ate yesterday.  He was a force to be reckoned with :)  He is even switching hands to feed himself, using his strong arm to pull his weaker hand up to his mouth.  He is working it!!

Saturday, April 16, 2011

Hospital Triple-Play

It's late, just after 3AM, and we can barely keep our eyes open.  After a very long day we had to return to MSKCC Urgent Care around 10PM tonight, only to wait for hours on end before our room was ready.   Don't worry, Ty is fine.  Unfortunately his bloodwork showed that the dosing on his antibiotics is way too high and it may be dangerous so we had to return to the hospital for at least 24 - 48 hours in order to sort this out. 

Vancomycin, the antibiotic he has been on many, many, many times, needs to be at a safe, therapeutic level when it is administered.  The way they ensure this is by checking the levels in his blood periodically.  For whatever reason, Ty's routine bloodwork that was drawn during radiation therapy this morning showed that the levels were twice as high as they should be and therefore dangerous to his kidneys.  Our nurse called to break the news to us about 10 minutes before we pulled into our driveway after what already seemed like a long day. 

Since the levels were so inexplicably high, the nurse was convinced that the bloodwork was probably contaminated (meaning, perhaps some pure vancomycin had been pooling in his mediport so when they drew back a blood sample it seemed much more concentrated).  Well, we certainly didn't want to drive all the way back to the city just to confirm such an error, so we went to work trying to find a facility near our home that could do the labwork at exactly the right time and get the results within an hour so we wouldn't miss a dose.  It was frantic and totally frustrating.  Quest Labs… Labcore… people don't actually answer the phones at ANY of these facilities!  It was driving me so crazy, we ended up getting it done at our tiny, local hospital and it was actually very easy.  We were in and out, and sure that everything was fine.

Not such a happy hour on this Friday night
I don't know what we were thinking. After we came home from hospital #2 we settled down on our comfy couch, heated up some pizza, cracked open a beer and talked about the relaxing weekend we had ahead of us.  What fools we were!  We always get so mad when our doctors are surprised by Ty, so I guess we jinxed ourselves and ended up being thrown off guard ourselves when we got the call tonight.   It wasn't a fluke… Ty's antibiotics are running dangerously high and we had to return to the hospital for the third time today, this time overnight.  

I took my time and read Gavin a couple of extra bedtime stories tonight. I hugged him extra tight and kissed him twice as much.  I am just so sad about being robbed of all this time with that incredible baby boy.  I hate the thought of him waking up tomorrow morning to find me gone again.  He's such a good boy and I miss him so much. 

It also breaks my heart to bring Ty back inpatient.  We left at 5:30 this morning for hospital trip #1, returned home at 1PM, left for hospital #2 at 2:30PM, returned home around 5PM and left for hospital trip #3 at 9PM.  He is not taking it very well.  We have already had a really tough time trying to help him adjust to being home and trying to rid him of his fears and insecurities.  Just when we start making progress and he was accepting the daily trips for radiation we are back inpatient.  ARGH!  Poor little man.  We also have the smallest room, most overcrowded room on the floor.  Lou and I are so wiped out, I just want to crash until tomorrow afternoon.  If I can't be doing what I want to be doing, at least let me catch up on some sleep! (yeah, right, as if Ty would EVER allow that!).  Oh well.  Looking forward to Wednesday. As long as he keeps getting better, I will continue to try and take all of this in stride.  Each step gets us closer to the day we can put all of this behind us.


XOXO - SuperTy

Friday, April 15, 2011

Hot dogs are the new bacon

I mentioned that Ty is eating and drinking again.  What I didn't mention is that the ONLY thing he will eat is hot dogs.  With milk.  Hot dogs are the new bacon (which was replaced with steak for a brief period of time - but that's over, too).  I guess it has to do with the salt, because I'm told that the chemo and radiation affects how everything can taste.  He actually asks me to put salt on his hot dog and I make pretend to do so before feeding him.  I never used to give him hot dogs because of the nitrates, but I guess since he has cancer I am just happy to see him taking in some fat and calories any way I can.  Bring on the dogs for breakfast lunch and dinner. 

Ty hasn't been able to drink liquids since January, and he showed little interest in drinking anything at all for the past few months.  Even when I did convince him to have a sip here or there I had to thicken everything (with a gelatin powder called "thick-it") to avoid aspiration.  I hated it.  His tongue was like cardboard and I used to worry about how uncomfortable it must be to never wet his mouth, especially in the hospital where the air is so incredibly dry.  Earlier this week I decided to see how he does without thickening his drink, and to my surprise he was able to take it down without any problems.  No coughing!  He was able to use the straw too.  It's harder for him to use a straw instead of a cup because he has to work at it, but it's good for him to build those muscles.  I can't find the right way to express what a big deal it is.  It means I can carry an extra juice box in my bag for when he gets thirsty.  It means I can stop worrying so much about whether I have enough time between getting home from the hospital and going back to properly hydrate him through his belly tube.  It means we can be more mobile because he can drink on the go.  This is huge. 

TGIF!  We have the weekend off, and then three more days of radiation.  We have been staying late at the hospital every day for fluids, bloodwork and physical therapy, but getting clearance to go home at the end of each day and see Gavin for the dinner/bath/bed routine is so great.   Ty's doctors have been very supportive of our desire to stay home and they have been amazed at how well Ty is doing.  His infection remains under control… probably because he is on a constant IV pump filled with antibiotics through April 24th (at least).  We are happy. 

Thursday, April 14, 2011

I am a lioness

Cancer picked the wrong family to f*ck with.  Doesn't cancer know that I will protect my baby cub with raw, fierce and violent determination?  I will never give up hope, I will never lose faith and I will never stop fighting for the love of my life.  Even after Ty is victorious, I will continue to fight ferociously for the rest of my life.  My mind will forever be consumed with the unfairness of this disgusting illness and I will never stop reading, researching and supporting efforts to find a cure to cancer in any way that I can.   F*ck you, cancer!  I HATE YOUR GUTS!  I want to reach into my baby's body, pull out his tumor and mutilate it using every type of violent, obscure device I can think of. 

Maybe cancer had its eye on me for a while.  Thought I was some silly blonde girl who smiled too easily to hide a slightly frazzled life.  A girl who got overwhelmed easily trying to balance life, work and two babies on coffee alone.  A girl who was forgetful and weak.  An easy target.  How wrong you were, Cancer.  That baby is part of me… the best part… and I have never been stronger.  Since the second he was born there has been a fire burning in my heart.  You mess with him, you mess with me and I will never waver.  Cancer has tried to pull every dirty trick in the book during this fight.  CHEATER!  You will not win.  You will die. 

When Ty cries out in pain from this putrid, evil disease, I often snuggle him and caress him and whisper to him that "it's okay."  It's a natural thing to say, but every single time I say that Ty gets so angry and says, "no, it's not okay!" and he's totally right.  I tell him he's right.  This is NOT okay.  Cancer is not okay. 

As you all know, Super Ty likes all superheroes -- including the Hulk -- and he is familiar with the phrase, "don't make me angry… you wouldn't like me when I'm angry."  This morning I was encouraging him to embrace that mantra and to let the cancer make him angry.  Let's finish this!


We are done with radiation treatment on Wednesday morning.  It's been difficult, but we are almost there and the radiation is working.  We will take a break through Easter weekend and then back to the hospital for 7 - 10 days to deal with his infected shunt before we can begin chemo again.  I will keep you posted.  Thank you for your support. 

Tuesday, April 12, 2011

Love is all around us

When I was in the hospital on Friday, completely harried and totally exhausted, I received a surprise visit from one of our new neighbors and it completely turned me around for the rest of the day.  She drove all the way down to deliver a beautiful basket filled with various contributions from pretty much every single neighbor in our development.  It brought me to tears when I began going through the gifts after she left.  And, of course, nothing gets Ty more excited than "pennies" - which is what he calls "presents" (he especially loved the Easter book that we've read about 100 times by now). On top of that, I learned that while I was away from home for more than three weeks, our neighbors rallied together (thank you so much, Marilyn) to  provide home cooked meals and non-stop groceries for Gavin, Lou and our amazing babysitter Amela.  What a tremendous help this was to my family.  I can't wait to get to know our neighbors better, we are very lucky!

When we arrived home, Ty had the biggest package waiting for him that I have ever seen.  I think the entire state of Georgia contributed to this care package, and it was FILLED to the brim with LOVE.  Ty really turned around yesterday and he was being such a good boy (sharing with his little brother) so we decided to pull out the box for him when he least expected it.  OMG!!!  I wish I thought to video tape his reaction.  He lost control to non-stop giggling.  There were toys upon toys (a dream come true to any three-year old); you just wouldn't believe the array of amazing things.  Lou and I were in just as much awe as Ty was.  When we began going through the cards together I couldn't believe how many people who we have never even met took the time to send such amazing words of encouragement.  Thank you, thank you, thank you, thank you, thank you (Mary, you are amazing).  

"For you I bleed myself dry…"
Mary, who was responsible for pulling together that amazing package, also included a CD of fun music for Ty.  This was huge for me because I can't tell you how much I HATE the one CD of completely awful kids songs that TY otherwise makes me listen to over and over and over again.  I wasn't even sure he would allow it, but as soon as he heard the first song he was totally into it, and so was I!  What a treat to listen to some new music. 

In the middle of some of our favorites from Disney movies and SpongeBob was a song just for me… Coldplay, Yellow. I always thought that song was a beautiful love song but I never thought of it in the context of my love for Ty and I haven't listened to it in ages.  Coldplay is one of my all time favorites, but I rarely listen to any music these days because I can so easily fall into sadness.  As soon as I heard the first chord, I started weeping, but it was such a good cry!  A river of tears streamed down my face because every word rang true to how much I love my baby boy, and how much the world around him loves him, too.  I needed that, it felt really good and I listened to it over and over again while Ty slept quietly in his car seat.  How cute that the following song is Hakuna Matata from the Lion King J

Arbonne!
I recently received two "pennies" for myself, as well.  A set of super "comfies" that were delivered to my hospital room (what a treat!!!) and an incredible array of products from Arbonne.  I never used that line of skin care products before, but after just two days I swear I am a lifer!  I don't look like I'm 100 years old anymore, I actually feel a little refreshed!  Of course, sleeping at home the past two nights helped, but I swear I love this stuff and I am hooked.  The gift included baby products as well, like lotion and sunscreen, and I can't wait to try it.

Terrific Ty
Most importantly, Ty is doing terrific.  He is definitely going through an emotional adjustment because we came home only to return to the hospital for hours on end each day, but he is getting stronger every day and making amazing strides.  He can hold his fork again, he can hold his head up well, and he is actually eating and drinking a little bit throughout the day.  The radiation is working Y'all! 

Sunday, April 10, 2011

Rain, rain go away

Not sure if anyone remembers this, but there was a Peanuts episode where Charlie Brown was constantly followed by a rain cloud (I'm not referring to Pigpen, but a time when Charlie Brown had the blues due to a series of unfortunate incidents).  That pretty much sums up the past couple of days for me and Lou, with beatiful moments of breakthrough sunshine that made it all worth it.

Before I go through the laundry list of our own unfortunate events, I should preface this by sharing with you something that Lou and I used to say all the time before Ty was diagnosed.  We used to try and laugh off all of the uncanny bad luck we had when it came to the smaller things in life (like spilling red wine all over the new white couch, fender benders, the boiler breaking on the coldest day of the year and the refrigerator breaking on the hottest...), but we always agreed that we were otherwise so incredibly lucky when it came to the more important things in life (our loving family and friends, our amazing parents, I had a good job at PwC, Lou enjoyed his career as a chiropractor, and of course... Ty and Gavin).  In fact, there was a silly "25 things about me" that circulated ages ago when I was new to facebook, and one of the 25 things I wrote was that I feel so lucky in life, my greatest fear is that some day the bottom will fall out.

Well, fall out it did.  Regardless, the amazing news and the most important part of this story is that we have been discharged from the hospital early.  I was given a choice, knowing that I will have to return on Monday for radiation and that there are a lot of meds to manage on my own, but I decided it was worth it for Ty to go home this weekend.  His infection is under control for now, and with only one more week of RT to go (and three days that they recently tacked on!!!) the doctors felt that it would be okay as long as we promised to rush back if there were any signs whatsoever of a relapse. 

Of course, we needed to be sure Ty could hold down his feeds without vomiting too frequently before we could leave.  After he had gone 12 hours without vomiting, I told the docs I was ready to get started on discharge.  It took me forever to pack up, and it took the nurses even longer to get everything ready, but by the evening we were ready to go.  Right when the nurse came in to unhook everything, Ty started throwing up.  No big deal, I said, he's been fine all day.  10 minutes later, he throws up again.  I've seen this before, par for the course, let's keep the ball rolling because by now Ty knows we are leaving and there's no way I'm telling him he can't.  He hadn't complained of head pain in a couple of days, he was getting stronger by the minute, I wanted to bust him out no matter what.  We got out of the hospital without a hitch, but unfortunately the vomiting became an increasing issue.  I've been alternating three different antinausea meds every hour or so ever since and it's been very stressful. 

Ty slept okay during our car ride home, until we ran out of gas in the middle of nowhere.  Yep.  We did.  You're wondering how we let that happen?  Well, our fancy car said we had 30 miles until an empty tank, and we were so worried that we would waste too much time and risk Ty waking up/getting sick in the car, so we decided to go to a place we know just a few miles further rather than pulling off on some country streets and potentially going miles out of our way before finding a gas station.  We called Geico for service, it took 10 minutes before they got all of our information and located us before they told us that it just so happened we were "in between" service areas and they couldn't service us.  We called the State Troopers, they showed up in about 20 minutes (by now Ty is awake and freaking out) but they don't have gas, they can call a tow truck but it will take at least 45 minutes.  We called our friend, who met us with a huge gas can in the same amount of time and we are so grateful (thanks, Charlie). 

We needed to be home to meet our "at home" nurse by 7PM.  We didn't get home until 9, and she didn't arrive until 9:30.  Now we are 3.5 hours late on his antibiotics that were due at 6.  I open the fridge to get him set up only to find that the meds that were delivered were in individual doses although I was specifically told we would be getting a backpack pump that only needs to be changed every 24 hours.  What this error means is that instead of once a day, I would be administering IV meds at 9am, 11am, 3pm, 5pm, 9pm, 11pm, 3am, 5am...(not to mention the countless oral meds in between - see picture below for an idea of those). Part of my decision to go home was to allow for some much needed rest.  I was beyond upset and had to suffer through a completely sleepless night until the pharmacy could deliver a backpack around 3PM the next day. 

Once we got home, Ty also suffered some significant episodes of severe headpain.  I can't tell you what that does to me.  I wanted to scoop him up and run him back to the hospital but Lou was great at calming me down.  Why, when he was doing so well in the hospital?  I kept looking to God and saying "please, allow his brief time at home to be without such pain."  It took a while, but he answered :)  Ty has been doing better with both the vomiting and the headpain over time.  In fact, we enjoyed a very happy evening together tonight, it was such a blessing.  However, I am saving some of his amazing homecoming gifts (HELLO MARY KING AND THE REST OF GEORGIA - THANK YOU XOXOXOXOXO) until he can truly appreciate them :)  But, wow, am I excited to see his loot.  He so deserves to be spoiled like this - I expect smiles from ear to ear. 

So, my point is that I feel like this little rain cloud has been following me again, but I am dealing with it the best I can.  As you all know, I will happily trip and fall when walking down the aisle on Ty's wedding day and I will still enjoy every single second of that day.  Just let me see that day!!  Let me feel lucky when it comes to all the important things again. 

Side note:  I am in the market for a new bag for Ty's meds and other misc. items that don't fit in the diaper bag.  Suggestions?  Another diaper bag might work but they never seem have enough small compartments for all of these bottles that need to remain upright.  I am embarrased to say that I made this with cardboard the other day to keep his medicines in order when the last bag ripped.  It's working great, but it is NOT exactly attractive to carry around ;)

I look forward to updating you on an amazing day tomorrow.  I do think Ty is on the up and up and I look forward to hearing what his doctors think.  Hugs and kisses to all of you out there.  Thank you so much for loving my special boy and for keeping him in your hearts and prayers. 

Thursday, April 7, 2011

Oh no... I have to pee!

When I am alone with Ty, a trip to the bathroom is the most stressful experience.  Parents are not permitted to use the restroom in the patient rooms unless both occupants are not using it.  Ty's roommate is almost four and he uses the potty, so we have to go down the hall to the shared bathroom to wash up, get changed, shower and, obviously, go to the bathroom.  I totally get it and appreciate the rules because it is important to be as sanitary as possible for these little fighters, so I certainly don't want to come off as if I'm complaining.  That is not my point.

I just thought I would share this with you, because it should be such a simple thing... wanting to brush my teeth before I go to bed... or wanting to wash up with a proper skin regimen and moisturize my face before bed... yet it is the complete opposite of simple when we are here.  If Ty is awake, I have to prepare him for the fact that I am leaving him alone in the room for a few minutes.  He is never happy about it.  I have to put on a movie, bribe him, etc.  Then, as soon as I set foot outside the door, the panic begins... what if he throws up?  He throws up ALL THE TIME, what if I'm not there??  When I sneak out while he's sleeping it's even worse because I worry he'll wake up nauseous or in pain and have no idea where I am.  My trips to the bathroom are comical.  I rush everything.  I actually floss in the room before I head down to the bathroom to save time, and I leave prepared in such a way that I can go through my bedtime routine as fast as possible (pajamas, brush, splash water on my face, pee, run back to the room).

I am sharing this only because I just returned from that stressful place and I was beyond relieved to find that Ty had fallen asleep in the short time that I was gone.  It is just top of mind, I guess.  I realize that sometimes this blog gets a little silly or I get hung up on some boring details, but I want anyone who is reading this to know that it helps me.  Posting these updates give me a lifeline to the outside world, and your constant, unwavering support helps me to find solace and rest a bit easier.  Not to mention that it is an incredible outlet for all of my pent up frustrations (as evident in today's topic :)).

Ty is resting peacefully and he is doing well.  He has regained so much strength in his right arm that he is proud to say he can pick his nose again.  He also reaches out to me with that hand and wants to cuddle every night, which... how can I even put in words how that makes me feel.  He is just so special.  I wonder if it gets annoying to him to hear me tell him how cute and how special he is a million times a day! 

Goodnight all.  Thanks for caring.  XOXO.

Wednesday, April 6, 2011

SUPER NEWS FOR SUPER TY

Ty's MRI today showed significant improvement.  Lou and I just received the news back-to-back from our neurosurgeon and our neurooncologist, and I feel so excited and jumpy it's as if I've had 10 cups of coffee.  I am crying, laughing, biting my nails and practically peeing my pants :)

Ty's tumor shrunk, the compression on his brainstem is significantly reduced, his ventricles look smaller and there has not been any progressive disease or infection found in the rest of his spine.  We were warned prior to the MRI that we should be prepared in case the tumor looks larger.  Since radiation often works slowly and continues to work for up to 3 months post-treatment, we were told that when scans are done this early into radiation therapy, a mass might swell or become necrotic and the imaging can be unclear as to whether or not treatment is working (i.e. the tumor might appear larger when it is, in fact, dying).  The point of today's MRI was simply to rule out any glaring neurological reasons for Ty's continued headpain and nausea.  Not only were we able to rule that out, but we were given an added bonus of being able to report that the scan looks "really good."  Our doctors are pleased and we are beyond relieved. 

Next steps are still a bit uncertain, but we are definitely planning for two more rounds of chemotherapy (21-day cycles each).  Ty will have to have his shunt replaced beforehand, so we don't know what that means as far as how soon we can begin.  We will keep you posted on that.

THANK YOU for your continued prayers and positive energy.  And thank you for reaching out to us with words of support during these difficult times.  We are so blessed.  Keep it coming!!

Tuesday, April 5, 2011

An ugly pair of shoes

Look at this guy!  He's doing okay.  Lots of nausea, but lots of smiles, too.  Here he is in his "activity chair" getting physical therapy.  He spent a lot of time sitting up like this today and playing games.  He has come such a long way over the past couple of weeks, it makes my heart sing.  Sorry it's sideways, but I can't seem to fix it.

Tomorrow Ty will have an MRI to rule out whether or not the tumor might be causing his incessant nausea.  In my heart I don't think this is tumor related, but I am still a nervous wreck about it.  I will be praying all night, all morning and all day until we get the results following tumor board.  The doctors should also be able to deliver a better idea around next steps post-radiation, as well.  It will be a big day, please pray for us. 

Pasted below is a poem that I've read this on several other blogs from moms who have lost a child or who are in a similar situation as my own.  I don't recall ever reading it before I entered into this difficult reality of mine (or perhaps it just hadn't resonated with me in the past).  It really hits home, especially when I'm so sick and tired of walking these hospital halls that my feet ache.  Since the author is unknown, I took the liberty of adding/omitting so it best fits my situation.

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I cannot take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
I can tell in others eyes that they are glad they are my shoes and not theirs.

To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.  Too many.
Some women ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.


- author unknown

Monday, April 4, 2011

Getting stronger every day

Ty is still very nauseous. He was unable to keep down even his meds today. But in between getting sick, he was happy and playful. What an amazing sport he is. Such a fighting spirit. We played Bingo again tonight, and he was able to spin the cage for the first time in months, which he was very excited about.

I was talking with one of his doctors today about how far he has come despite endless complications and the fact that he has what is known to be the most aggressive types of childhood cancer. We agreed that he is beating the odds and I said that we have him and his other doctors to thank. Ty's doctor corrected me and said that Ty is the one that's doing it all and that he deserves all the credit for his amazing strides. That Ty alone is the one who is beating the odds. I thought that was surprisingly humble and very sweet of him to say about our little fighter. And so true!

Sunday, April 3, 2011

Let's have a good week

Ty had a terrible day today?!?!  He had head pain and he was throwing up all day long :(  No one is sure why, but we think it may be because we are tapering the steroids and so it may take a couple of days with each change in dosage for him to adjust.  Hopefully his nausea and head pain will subside by tomorrow or Tuesday. 

At the same time, Ty is physically showing a lot of improvement.  His hands and arms are stronger, and he is beginning to move his right leg a tiny bit.  It's very exciting for all of us, especially Ty.  His face lights up when we show him how excited we are with each small improvement.  Love that smile of his :)  Radiation tomorrow.  Looking forward to a good week!

Saturday, April 2, 2011

Another week down - Ty is still doing well

I haven't posted for a few days because Ty was actually doing so well there was a possibility we were going to be able to go home as early as Friday and I didn't want to jinx it.  It didn't matter, because Ty ended up taking some small setbacks regarding his infection anyway and it was decided that we should stick with the original plan and tough out the rest of radiation therapy inpatient at the hospital.  I had a feeling it was too good to be true :)

No worries, though.  Ty is feeling great.  In fact, his speech has improved so dramatically that he is saying things that I never heard him say before.  It's as if he's been harboring this vocabulary that he just wasn't able to show off yet.  I can't even tell you how good it feels when Ty helps me to read his books aloud and participates in some of the interactive shows like Dora by saying the answers out loud.  The baby that was diagnosed with a brain tumor in August is acting like himself again, only now he is a BIG BOY!

The candy cart came last night and Ty is sporting a new candy watch that he loves.  Hugs and kisses to all from the hospital.  Two weeks down, two more to go!