Thursday, November 10, 2011

Miracle MRI recap

Tuesday was one of the most stressful days of my life.  It already seems like it was sooo long ago.  I have been walking on clouds ever since and life just doesn't feel real yet! 

Following a sleepless night on Monday (of course) Lou and I hit the road at 5:30 in the morning to arrive in time for Ty's 7:30 MRI appointment.  We arrived five minutes late, but because Ty's mediport wasn't accessed yet (which caused delays) they had to push his appointment back to 11AM.  Can you imagine having to wait another three and a half hours on top of the endless waiting that preceded?  I was falling apart.  On top of the obvious anxiety, Ty was NPO so I wasn't going to eat or drink anything in front of him all morning.  I went without my morning coffee and I was dying for it.  Oddly enough, I crave caffeine the most when I feel the highest levels of stress. 

Ty was under anesthesia for more than two hours, so Lou and I went to our usual place down the block to get something to eat.  Imagine sitting at breakfast talking about day-to-day things with your husband while you wait to hear whether your son is going to live or die?  That is exactly what we did - for what felt like the umpteenth time.  No one should have to go through that.  It is horrific. 

Lou and I both had a bad feeling about the MRI.  We tried so hard to stay positive, but I would be lying if I said that we didn't think otherwise.  We were very concerned over how weak Ty has been.  We returned to the hospital to be with Ty when he woke up, and it took another three hours in the waiting room on the pediatric floor before our doctor arrived to discuss the results with us.  It felt like an eternity!  A torturous, slow and painful death!  Finally, I saw him walking toward me just seconds after Lou left to go to the bathroom.  I could not get a read from his face what-so-ever as he walked toward me.  "It's good," he said, before he was even close enough for me to hear.  I was reading his lips but I couldn't be sure of what he was saying because I was so panicked.  "What??  What??" I needed to hear it again and again. 

"It's good!  It's good!" he repeated, more excitedly this time.  "I just wanted to get that out of the way before saying anything else."  What happened after that is a blur.  Lou found us.  He was white as a ghost when he saw me with the doctor.  I told him it was good and he needed me to repeat it for him, then he needed to hear it from the doctor.  It is a miracle.  A MIRACLE!!

So, the next questions are... When is his next scan?  When can we stop the chemo?  His next scan is in two months, and over time it will eventually be moved out to every six months.  Some day he will only have to visit the hospital once a year to high-five his doctors and thank those nurses and other medical staff who remember him from when he was a toddler.  I have visions of this and I believe in those visions.  As for treatment, for now he will be on chemo indefinitely.  His doctor does not think there is any microscopic disease, rather, he wants to maintain therapy to combat any future mutations that may occur.  We can never know if or when this might happen, just like we don't know how his cancer started in the first place, but since Ty's original tumor metastasised there is a greater chance that such mutations may occur again. 

How and when do you just take a chance by stopping therapy?  Especially when the chance likely means life or death?  If our prayers continue to be answered, this is a difficult decision we will face in the future, but right now I am just happy.  I am thrilled.  I am OVER THE MOON! 

So, we are trying to resume with life.  Ty returned to preschool today and he was really excited to go this morning!  He didn't last the entire time, but he had a lot of fun while he was there. 


When Gavin saw me taking this picture of Ty, he wanted me to take his picture, too.  Here is adorable Mr. Bedhead in his pajamas.  Cheese!


Before Ty was diagnosed, Lou and I booked a trip to Mexico to celebrate our fifth wedding anniversary.  We were supposed to go in September, 2010.  Of course, we had to cancel the trip, but Lou and I recently decided to reschedule for next week!!!  We have changed the itinerary to include Ty and Gavin, and we are going to celebrate on the sunny beaches of Riviera Maya starting next Tuesday.  Ahhhh.  I can't even imagine what it might be like to feel relaxed, but I hope I can reintroduce myself to that foreign feeling. 

Ty is on a different chemo as of yesterday.  We finished the most recent cycle with Cytoxin and we are now starting our third round of Temodar.  Last night, Ty got sick from his new medicine and he threw up his entire liquid dinner.  I was more careful tonight, making sure he didn't eat as much before bed and giving Ty anti-nausea meds before he fell asleep.  I have to sign off to administer the rest of his medicine now, and I am crossing my fingers that he handles it well.  Goodnight everyone.  As always, I can't thank you enough for all of your love and support.     

6 comments:

  1. I don't know how you and your husband can handle those kind of long hours waiting for results. God Bless you both. I am glad your family is going on a vacation .

    Prayers from Texas,
    Robert

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  2. This post brought tears to my eyes... I just can't imagine. You are a rock star, and so is that precious boy. We'll keep praying. xo

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  3. Riviera Maya is BEAUTIFUL. While you are there I hope you and Lou get an opportunity to sit and raise a glass to each other and toast what you have done for Ty. Besides Ty's amazing will and his incredible dr.'s I believe that you and Lou are the reason Ty is where he is today. The crucial decisions you have had to make and the love and positive attitude that you showed Ty at times when you didn't feel that way inside are amazing. While I don't know you guys personally I feel that I am a better person because of your family and this blog.

    So I hope that everyone that knows you guys or reads this blog will join me in toasting two amazing people and parents. Enjoy the trip you all deserve it.

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  4. I am always crying when I read your updates....but, this time just tears of utter joy. I am SOOO thankful that Ty had a clean scan. He is a TRUE miracle boy! :)

    I am thrilled that y'all are going away w/ the boys. I think this is a great idea!! Ty (as well as the rest of the fam) needs some much needed fun, sun, peace and relaxation. I often wonder what his little mind thinks about all of this. Does he comprehend it? Does he really get it? Does he wonder why me? Well, he doesn't have to anymore!! :) YEA!

    I can't wait to hear about all the fun y'all have on your trip.

    Love,
    Jan
    Georgia

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  5. AMEN!!! That is such amazing news and I'm ecstatic you guys are getting to take the vacation you all need. I will be thinking of you next week soaking up the sun, playing in the sand and having a much needed cocktail. Love u all and am so glad all the prayers have been answered! xoxo

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  6. I woke up last night at 4 in the morning..remembering I never checked the the blog to see what the results were.. I am so nervous this morning coming down the read it. I am so happy for you I have tears in my eyes. It truly is a miracle and I am so happy for all of you. Enjoy your well over due vacation.. You need it.. All of this should make us all hug our children a little harder and learn not to sweat the small stuff

    Congratulations to you all..have fun celebrating!!

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