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.

11 comments:

  1. We are so happy to hear such wonderful news. The way that you and Lou deal with this together is truly inspiring. You make a great team, and you are so lucky to have each other. Sending positive thoughts your way always....

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  2. We believe, we believe, we believe! You are all in our prayers always.

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  3. Such terrific news.. I am so happy for all of you. I pray for the day when this is just a terrible memory of your past and your sitting at a school play watching Ty as the lead. As always my prayers are with all of you

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  4. I'm so happy for all of you. What great news!

    Ann from Buffalo

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  5. Tears of happiness are streaming down my face as I read this! Halfway there, baby!!!!

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  6. Tears of joy! Great news! So happy for your family...especially after the tough weeks you've been having. I came across your One Year youtube video last night and I truly believe we are all witnessing a miracle! And Ty is going to prove those doctors wrong again when his physical abilities continue to improve! Go Ty!

    xxoo The Powells

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  7. Amazing news! Still praying for super Ty, Lou, Cindy and Gavin daily!!!

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  8. Praise God From Whom all Blessings Flow! I am so happy to hear this wonderful news. I pray this just continues and that Tyler will prove all his medical team wrong. May He continue to bless and keep you in the palm of His hand.

    Janet
    COLE's Prayer Team

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  9. Oh god Cindy and Lou its all so intense just to read about. I can't believe what you guys have to go through every time. And every day!

    He will get to the 2 year NED mark and further. We all believe in Ty. Evidence seems to support that he is capable of anything! I absolutely believe this from the depths of my soul and I will never stop believing it. "HE COULD ALL THE WAY..."

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