Tuesday, March 27, 2012

The last laugh

I don't know where to begin.  It's hard to even imagine describing the events of the past few days in detail, so I am going to keep it as simple as possible so everyone has a true understanding of what happened to Ty, why, and how we plan to "fix it."

First, let me explain the part of the brain that is being destroyed as a result of Ty's current radiation necrosis.  Most of you know all of this, but just to recap: Ty's original tumor was growing at the base of his skull, the clivus, which is the bone that ends behind the nose/right above where the throat begins. The tumor was about 1.5 centimeters and it was discovered because it began to cause pressure on his brainstem and give him headaches/sweating at night. The brainstem is like "mission control."  It controls the flow of messages between the brain and the rest of the body, and it also controls basic body functions such as breathing, swallowing, heart rate, blood pressure, consciousness, and whether one is awake or sleepy. The brain stem consists of the midbrain, pons, and medulla oblongata.




Ty's original tumor was surgically removed endoscopically through the nose and mouth.  We didn't get all of it, and what was left was a piece that was closer to the brainstem area that was too dangerous to remove.  We treated with chemo but Ty got so sick, there were a bazillion complications, and in the end the tumor was a raging beast, growing rapidly, and his neurosurgeon went in again for an almost complete resection last February.  There was tumor artifact left on the wall of the brainstem/medulla, but this time we were able to go to radiation to destroy it.  There is more to the story, of course (the metastases in the cerebellum, additional radiation, countless CNS infections) but there's no need to recount all of that horror right now.

Radiation saved Ty's life.  His cancer is an extremely aggressive one and we don't ever doubt our choice to move forward with this option.  Unfortunately, Ty is now suffering from radiation necrosis and it is devastating.  Children under three years old can't even receive radiation.  Ty was only three and four months.  The risks are great.  I still can't believe that after all of this time, with so many advances in cancer care, that children are radiated in the same machines as adults.  That the chemo they receive is the same as adults - stronger actually.  That the advances in pediatric cancer care pale in comparison to those geared toward common adult cancers.  It's tragic and it's callous.  Lou and I so desperately want to help to change this in any way we can, and when Ty's health allows us more time we vow that we will find a way to better contribute to the cause and we hope we can inspire others to do the same.  But, I digress.  Back to Ty's current situation.

Today, Ty can't move his arms or legs very much at all. Both of his hands are in a very rigid, cramped position at all times. He can't hold his head up and his trunk is too weak for sitting. His head slumps down to the left. He is back in diapers. His chewing is weak and his speech is a whisper.  We are being advised to prepare for this new reality.  That physical recovery from this kind of brain trauma is not likely.  Of course, Lou and I believe otherwise.  Always believe. 

Our doctor provided a good analogy to help us understand what has happened.  Imagine that Ty's healthy brainstem tissue was coated with a layer of tumor that was being destroyed by the radiation over the short period of time during which it was administered.  At some point during the treatment, the radiation harmed some of the healthy brain cells, too.  They weren't killed, but let's imagine that a cluster of healthy cells were aged 90 years in the process.  So, they survived radiation and allowed Ty to heal and to grow stronger every day - still making all of those critical connections between the brain and the rest of the body, until one day they reached their maximum lifespan and began dying off (necrosis).  That is why radiation necrosis doesn't present itself for a year or two - even ten years - post treatment.   And when it does begin, especially in a critical area like the Medulla where the slightest change has a tremendous impact, the result is devastating - sometimes even terminal.

Everyone is pretty sure that Ty's latest episode has peaked, and that the necrosis has slowed down or stopped.  Can it start again?  Yes.  At any time.  There may be the next layer of healthy tissue that begins to show treatment effect.  But, as I said a bazillion times before, we have to believe in our hearts that this won't happen again. Ever. 

Ty seems to be approaching a safe zone because we are finally seeing slight signs of improvement.  The biggest one being his pain... it is finally slowing down.  We dropped his morphine dose down and spread it out a bit.  I am also seeing some physical improvement.  It is minimal, but I swear it fills me to the brim with positive thoughts and hope for amazing things.  Why wouldn't it?  We have seen amazing things from this little boy before.  Many times.  Today I swear I saw him open his left hand and lift a couple of fingers.  Lou got tough with him and made him straighten out his head to watch Max and Ruby on the TV above instead of on the ipad that we placed in his bed.  After a long, stubborn fight Ty proved that he was able to do it - to move his head.  His tone in his legs has diminished, he isn't so stiff.  We are happy about all of these tiny triumphs.   

The doctors are realists.  And I appreciate it.  I truly do.  We need to know what we are facing, and how challenging the road ahead may be.  But, I am Ty's mom.  Lou is Ty's dad.  We will be hopeful to no end.  We have seen him overcome even worse news with miraculous triumph, and we expect the same this time around.  If that doesn't happen, our faith will remain stronger than ever and our love for Ty unwavering no matter what. 

Yesterday was a day for being completely destroyed.  I was depressed beyond my own comprehension.  Throughout this entire journey and all of its ups and downs, I don't think I ever stared at a wall, blank, for as long as I did yesterday afternoon.  I even went home in an effort to enjoy Gavin and I felt like a stranger to him.  I felt as if I was incapable of being his mom anymore because I was just too sad to function.  As much as I wanted to be, I simply was not there.  I cried and I prayed and finally I found respite later last night. 

I was an emotional wreck when Ty's physical therapist stopped by the house and she gave me the best advice of anyone yet.  She said we should consider putting Ty in an inpatient physical therapy facility to squeeze out the most recovery possible during these most critical weeks.  At first I couldn't fathom it... more indefinite time living within the walls of another medical institution.  More time away from home, away from Gavin.  But it didn't take long for my dread to turn into inspiration.   

When I called Lou on my way back to the hospital last night, we were both feeling the same way.  We were energized.  We were excited.  We were practically talking over one another with ideas on how we can help Ty recover to his maximum potential.  We are still in the process of researching facilities and thinking about our next steps, but at least we know the direction in which we want to go - and it is 100% focused on recovery.  We will be there for Ty every step of the way, as always, and we will celebrate every small step with all of you.

I entitled this post "the last laugh" because I pray this latest setback is the last one Ty will have to endure.  I imagine cancer wanted to have one last chance at hurting us before we destroyed it for good.  But I hope to have the last laugh when all is said and done.  To watch my boy do amazing things so I can laugh out loud on his wedding day.  Cancer never wins.  Even if Ty eventually dies of cancer, then the cancer dies too.  Nice try, cancer.  Handicapped or not, I know that Ty's future will be a happy one.  God is guiding him and no matter how all of this turns out, I know we will all be okay.  So HAHAHAHAHAHAHA!!!!!  Fuck you. 

 

21 comments:

  1. That a girl Cindy! I love you, Lou, Ty and Gavin more than the moon and the stars and the sun! Ty is and will always be my Sunshine!

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  2. I know Ty will get better. I believe too!!

    Prayers from Texas,
    Robert

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  3. YES YES YES!!! Is any hope lost? NO NO NO!!!

    I admit I moped around feeling depressed all yesterday. The second my head came off the pillow, I began feeling sad.

    Well enough of that! Time to bounce back. I'm so thrilled to hear that you have managed to turn around too. I know Ty can recover from this. I will not be surprised if his cells regenerate. I don't care what the doctors say. Plus advancements are being made in stem cell treatments that could potentially cure something like this, as long as we can keep dumb ass people out of office, unless they are like the Reagans who were very against stem cell research but only until Ronnie got Alzheimer's and then they totally changed their minds. But this is not a political blog.

    We are Warriors. Wantagh Warriors, that is. WATCH OUT radionecrosis. Watch this!....

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  4. For once, I can offer something in addition to my prayers . . . please look into Blythedale Children's Hospital for Ty. After a three week stay in the PICU at Westchester Medical Center, my son spent one month inpatient and eight additional months as a day hospital patient when, at age three, he sustained a TBI as a result of a car accident (right in Pawling, no less). At three years old, my son needed to be harnessed into a wheelchair, could no longer speak (much less spell his name three letters at a time the way he did before the accident), had almost no head control, was back in diapers, etc.

    We cannot say enough about the therapy and overall care that he received at Blythedale! He learned to speak, walk and feed himself again, slowly but surely! He was lavished with attention and affection – from the most important doctor to the therapists to the janitors. He even got to spend time in a preschool class, right in the hospital! It is truly a special place – one that significantly contributed to my son’s ability to fight his way back to a life full of possibility – even considering the continuing therapy and challenges!

    I will continue to pray for Ty, his family and medical team – that you continue to have the strength to rise to all of the challenges that lie ahead of you as you make absolutely certain that Ty has the best quality of life possible.

    Bernadette Schopfer
    Sherman, CT

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    1. Hi Bernadette. Thank you, this is so helpful. I wanted to send you a private message but couldn't locate your email on your profile. Lou and I are almost sure that Blythesdale is the best place for Ty. Would love to chat with you about it. Please email us at tylouiscampbell@gmail.com if possible. Thank you!

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    2. Cindy
      I finally saw this reply and sent a message to you via e-mail. If you did not get it, my e-mail address is bhschopfer@yahoo.com. Hope you are finding your groove and Ty is starting to make progress with regaining his physical abilities at Blythedale!

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  5. You are amazing. God bless you, and God bless Ty. I'm praying!!!!

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  6. Good for you! Enough of that feeling down shit! It's on to more important things! With your strength, Ty will beat this nasty disease!On and upward:)

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  7. I thought about you guys all day yesterday and said many prayers. I have read the prognosis but I know in my heart that doctors can be wrong and have been many times. Ty is going to beat this and he is going to get stronger again. We all love him and will pray for him and between the power of prayer and Ty's will he will beat this. Big hugs sent your way, you and Lou are great parents, the best thing we can do for our kids is love and support them. Take care. Rose

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  8. Go Ty Go! The Campbell family is not alone, we are with you, we cry with you, get mad with you, we cheer with you and we will always hold you up. All of us are there even if you think you are alone there are thousands of us thinking of you every moment of the day.

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  9. You are a force to be reckoned with. Prayers.

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  10. Ty WILL recover from this. We all have hope and are rooting him on! He is such a warrior. An amazing little guy that will triumph! I can invision him being a public speaker one day-tall, handsome, in a suit, behind a podium ALL FOR A GOOD CAUSE! Thats just my thoughts though :)

    Love and Light

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  11. And one has to wonder where Ty gets his courage--Cindy--your family is just amazing. I can't see Ty not getting better with the good vibes and attitudes you constantly have. Ty will beat the odds. He did it before and he has such a strong will, I know he can do it again! And he also has such strong followers cheering him on every step of the way!

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  12. Looks like we all agree that
    1. Ty is amazing nd has/will overcome obstacles that doctors doubt he can.
    2. Cindy nd Lou are incredible parents who refuse to give up their positive attitudes!!!
    We r all here to support u nd cheer u on as u continue to KICK CANCERS BUTT!!!! Cmon SuperTy, lets show em how its done. NEGU little fighter!!! Ur my hero <3

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  13. I have been following your blog for almost a year now. Ty ceases to amaze me. But you and Lou cease to amaze me too. I am so thankful for your faith and the testimony you are sharing with the world through Ty's cancer. I pray daily for Ty and your family. I am praying with you for God to work another miracle in Ty's story. It is beautiful in the midst of the ugliness of Ty's cancer to see God's beautiful hand at work. Our Father in heaven certainly has a special plan for your boy and your family. Hugs to all of you!

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  14. I love you, Cindy. You have no idea how much power your words carry and how much feeling they evoke. We feel your pain. We feel Ty's pain. We feel Lou's strength as he "gets tough" on Ty and makes him move his head and we cheer Lou on, grimacing wimps that we are. Your family is surrounded by a force field of love.

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  15. Hello Cindy, My son was born with a slight brain damage that affected the brain stem and all his nervous system. Theraphy did wonders for him beyond belief. A child brain is mostly developing up to 5 years old. It is the time where miracles happen. You must act fast and work both with physical theraphy and check into alternate medicine. Trust me these thinsg work and a miracle happened to our boy.

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  16. You are amazing! I so appreciate how real you guys are. I check on you everyday and pray for Ty constantly! You cannot imagine how it affects my life and mood. I guess we all have just developed a true love for your family!Course I am also from the Campbell family and we are strong, let's beat this stuff once again!Love and prayers, Terri

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  17. Thank you for sharing your life with us. I have been following your blog for at least a year now and think of you are your family daily. I don't think we will every truly realize why we go through some of the things we do but somehow that is God's plan for us. You were definitely chosen to be that little boys mother. The way you are able to handle each and every situation is truly amazing and inspirational. I hope and pray that your determination and strength will give Ty back his. God bless you and that beautiful little boy

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  18. Cindy & Lou,

    Ty will NOT die of cancer. . . I am not even entertaining that idea. Ty has overcome so much and he is such a strong little boy. You two are absolutely incredible and Ty is very lucky to have you guys! I will never give up hope. Your little boy is a fighter!

    Praying 24/7

    Joy Marielle
    Baltimore, MD

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  19. Cindy & Lou,

    Ty will NOT die of cancer. . . I am not even entertaining that idea. Ty has overcome so much and he is such a strong little boy. You two are absolutely incredible and Ty is very lucky to have you guys! I will never give up hope. Your little boy is a fighter!

    Praying 24/7

    Joy Marielle
    Baltimore, MD

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