Sunday, August 7, 2011

How did we get here?

One year ago today I put Ty down to bed around this time and he woke up just a couple of hours later. We had just returned home from our annual vacation at the lake the week prior, and ever since we got home he was increasingly whiny and restless each night. He always woke up, asked us to sleep in the room with him, wanted to move to the couch in the living room, and then he would just whimper and let out these sad, high-pitched cries for hours on end.

During the day he was perfectly fine other than being utterly exhausted (as were Lou and I), but there was something wrong each night after his head hit the pillow. We thought it was behavioral. That maybe during vacation he was having so much fun staying up and watching shows with his cousin that he was now fighting sleep. I still regret how I would yell at him at night, "STOP IT, TY! JUST STOP IT!" Lou and I were so irritable in the middle of the night, losing our patience with his antics.

But on this very night, 365 days ago, I decided to call the doctor sometime in the middle of the night. Earlier in the week we had already made an appointment for a sleep study on August 20 (2010), but I couldn't stand the sleepless nights anymore. What if he is in pain but since his 2-year old vocabulary is so limited he doesn't know how to tell me? The physician on call said that the sleep study sounds like the best approach, but if we wanted to subject him to a potential MRI with anesthesia we should take him to the Children's Hospital. Early the next morning, we had someone come over to watch Gavin and we were on our way. We just needed some peace of mind. We needed someone to prove to us that it was behavioral/psychological/habitual rather than something crazy like a brain tumor or something...

The first doctor to examine Ty said that our story about the nighttime crying is definitely odd and that we were doing the right thing to insist on an MRI, but then the neurologist examined him and found absolutely nothing of concern. She said they could fit us in for an outpatient MRI on August 16th. That wasn't soon enough for us - just the thought of another night of inexplicable crying was too much. We decided to get admitted to the hospital and wait for some time on the MRI schedule where a pediatric anesthesiologist was available.

We ended up spending three nights at the hospital waiting for that opening (long story).  For the most part, Ty slept beautifully on those nights which made the attending physicians doubt the necessity of the exam and reducing the urgency for them to squeeze us into the schedule.  Ty passed time racing up and down the hall on a ride-on train toy and making Play-doh pancakes.  We felt like silly, worried parents, but we weren't leaving there without a scan regardless.  God how I wish I could return to those days before we knew the truth.  That Ty has cancer.  Life was so much easier, sunnier, happier.  Even those three days in the hospital... when I look back we actually had some fun making the best out of the situation.  I remember feeling so sorry for the kids in the toy room and especially the parents of those who had no hair.  I never thought that would be me.  That I would soon be standing among them wearing the same ugly shoes.

Lou and I sat in the MRI room while Ty got his scan.  I had never had an MRI so I had no idea what it was like, but the noise was definitely more than I expected.  While Ty laid there sleeping, Lou and I sat in two chairs against the wall, holding hands but unable to talk to each other because it was too loud.  It felt like an eternity. 

When it was finally over, we were so happy.  Time to go home!  We were sent back to Ty's room to wait for the results and to allow Ty to recover from anesthesia.  Within 20 minutes we were all packed up and anxious to get out of the hospital - never to look back.  The fact that he slept well and that the neurology team didn't seem concerned had Lou and I feeling good about the results.  Lou said, "I'll go bring these bags to the car while we wait."  When he got to the hall he stopped because the team was approaching.  I watched his profile as he asked if the results were in.  "Yes?  Okay, great.  Are they good?"  His face dropped in slow motion as he turned to me and said, "We have to go out there.  It's bad." 

Still, I stayed positive.  We didn't know yet.  Maybe it wasn't a tumor.  "Bad" might not mean "cancer bad."  We were brought into a private conference room.  An ugly, closed off little room that offered no comfort.  I remember the nurse who was there, how she sat back in her chair as if she was relaxed.  I remember the neurologist, how I hated her face and I how I wanted to yell in it for making me think he was perfectly normal.   How her soft voice and monotonous delivery made me hate her more. I know it's not her fault that Ty has cancer and I don't really hate that person, but I hate that day, the news she delivered to me and the way she delivered it more than you can imagine.  If I close my eyes, I can put myself right back in that room with those same people only the yellow walls start melting and the room starts spinning every time I think about it. 

It all made sense afterward.  Ty's tumor was right at the base of his skull, basically in the middle of his head behind his nose and sitting just on top of the spine.  It was so severely pushed up against his brainstem that when he laid down at night, the pressure would build.  That was the only indicator so far that something was wrong, and he wasn't able to express to us how his head was hurting.  My poor baby.  How could I have yelled at him when he was in such pain!! 
After we met with the neurosurgeon, the oncologist and the social worker at Ty's original hospital, we were sent home to do our own research and select a neurosurgeon for his resection.  We made appointments with several of the best neurosurgeons in the state of New York over the course of the next week.  Within two days, I swear I told Lou Ty was slurring his speech a bit.  He thought my mind was messing with me, but then the next day he couldn't use his sippy cups or suck from a straw anymore.  It was as if the cancer was caught so it didn't need to hide anymore.  All of a sudden Ty was falling apart in front of us, and FAST. 

We arranged for surgery less than two weeks later, and so our journey began.  Thank you for being here with us every step of the way.  Without the love and support of all of you, I don't know how I would have come this far.  Sharing Ty's story is so important to Lou and I, and you are helping us to do that.  I am in the process of pulling together a chronological photo journal of Ty's fight and I can't wait to post it later this week, for our one year anniversary of his diagnosis.  In the meantime, I am reposting the video from our last vacation in case you didn't get to see it yesterday :)

9 comments:

  1. Cindy & Lou,

    As parents we all lose patience with our children. I have done it plenty of times. What, what, what Alex!!!! Go to sleep!!! We all do that. You can not blame yourselves for that. . . It happens to the best parents, and you two are truly incredible parents! As I have stated before and Im sure many would agree, your story has made me a better person, a better parent!

    Wow, a whole year with this terrible disease. And throughout the year, your little fighter has beaten the odds everytime. He is such an amazing little boy with an incredible will to live! Ty will continue to do what he does best, prove the doctors wrong and beat up the cancer!

    Thinking of you guys always!

    Joy Marielle
    Baltimore, MD

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  2. What a beautiful video, Cindy. So touching. There is so much I want to say, but I'll just pick one thought for now. You obviously know this, but it amazes me how much Ty has already touched so many people over this past year - so many more than most people do in a whole long lifetime. I know you wish that weren't the case. He was born to be your sweet little healthy boy, not teaching people the greater lessons in life about strength, love, endurance, family - the things that really matter. It is amazing though how much he has impacted my daily thoughts, how I hold my family closer and take in every moment because you never know...even after Rich's cancer living in the moment slips away sometimes. I pray that happens to you soon. That Ty beats this and you find yourself so stressed about the mundane things that you have to stop and remember to live in the moment. You'll know then that this whole thing is so far behind you. Lots of love to you and the whole Campbell clan - especially that incredibly little Ty. My prayers and thoughts are with you constantly.

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  3. I don't know how you do it. I have you and your family in my prayers every night. May God give you and Ty and your family strength to keep beating the odds. Thinking of you in Texas

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  4. Sitting here shaking my head and wishing they had told you that day he was just a bad sleeper. Thinking of your family often and praying for you guys constantly to beat this terrible disease.
    God Bless and protect your beautiful little boy and make him better

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  5. I second the comments made in the previous posts. Allison's point about how Ty has taught so many lessons to us rings so true for me. I think about that little fighter many times during the day when I don't want to do something that I have to do, when I have to push myself, when I feel anxious, stressed, depressed or plain sad.. I say to myself , if little Ty can do what he does, with stamina and determination, I certainly can do what I need to do, which is much more trivial in the scheme of things. I have even been on the treadmill wanting to quit those last few minutes when exhaustion sets in, and I say, this is for Ty...he is subjected to much more discomfort, and he endures it..and cooperates,, and he is only 3 for goodness sake...I know you would much prefer the stubborn uncooperative, little boy, not teaching lessons to all of these strangers..but G-d does work in mysterious ways. He has become the most beloved little hero...and you and Lou, the most beloved bigger heroes
    Sending you our love and as always wishes for an amazing and peaceful week
    Susan

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  6. "When you're going through hell, keep going."
    — Winston Churchill

    The Campbell's have taught us all that even in moments of hellish reality, grace and perseverance are the greatest strengths. The fact that you continually find ways to smile, share joy and offer your personal journey show the unquantifiable poise and bravery you all possess. Keep going.....

    Much love to you all. Keep enjoying the beautiful moments. Keep walking through this hell and remember that we are walking with you. Thank you for always sharing and inspiring us!

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  7. A year has gone by & you have taken all of us on your journey.
    The strength & hope Ty has given us shows us all that the power of prayer is very powerful. I talk about Ty constantly- Telling people NEVER to lose hope.
    God Bless the Campbell Family

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  8. There are no words to adequately to describe my feelings. You always say thank you for us all being with you on the journey and that we save you in some way. Thank you for letting us into your journey and no that Ty has saved so many. You know Ty is amazing and I hope in some small way you know how amazing so many of us think Ty is as well as you and Lou. You think you are not strong but you are and even when you think you can't put another foot in front of another - you do and you come out fighting. I do not know why this happened to Ty - but I no that he is so spectacular special that the English language has not made a word. So many want to win the lottery. If given a wish, I would wish child cancer gone forever. Many God's blessings.

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  9. Such a shame, I still cannot see it here in Germany! :-(

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