Monday, September 26, 2011

Turning the corner

Today we started Ty's new metronomic chemotherapy regimen.  Some of the medication stays the same, and we are rotating in some new medication as well.  We have a daily schedule - printed with check boxes on an excel chart - for up to six months.  His next MRI is scheduled for November 8th.  I can't even explain to you how much it scares me to have a plan in place because as you all know, every time we had any sort of schedule or protocol it has blown up in our face. Regardless, I am excited and hopeful that we have turned a corner.  That this time, Ty will not face any setbacks.  That he is getting better with every day and that's never gonna stop :).

Ty will continue to get Avastin at the hospital via IV every two weeks.  That drug is intended to prevent any new, abnormal vascular growth which feeds the growth of new tumor.  Biggest side effect concern with this medication is bleeding (due to the decreased vascular growth/recovery). 

Today he started taking small doses of Celebrex and Etoposide.  Yes, Celebrex, better known for treating arthritis, in combination with other chemotherapies, has been proven to trigger some sort of "self-destruct" activity in cancer cells.  The Etoposide is the daily chemotherapy/systemic toxin, that is part of this regimen and it has proven to work well with Celebrex in destroying existing microscopic disease.  In fact, Ty's doctor has one patient on the same regimen who had amazing results fighting an existing brain tumor.  He or she was too weak for traditional chemo and radiation wasn't an option.  The tumor has shrunk significantly in that child, and that is very promising for Ty considering we are only dealing with microscopic disease at this point (or maybe no disease at all! it's impossible to know, but that's what I like to think to keep positive).  The worst side effect on the high doses of Celebrex is constipation, drowsiness and loss of appetite.  The Etoposide may be harder on him with the side effects being nausea/vomiting, diarreah and possible hair loss. 

After 21 days of Celebrex, Etoposide and Avastin, Ty will take one week off and then start up another 21 days on the Temodar and Avastin routine that we just completed last week.  As we've seen, the Temodar only gives Ty occasional nausea, drowsiness and loss of appetite - but his counts remain very strong throughout treatment.  We will go back and forth on the two regimens over the next few months and I hopefully Ty will do well.   Hope he doesn't lose his hair!  Because he is looking so cute with it all grown in on top :)


So, that's where we are at on Ty's treatment.  Day one went off without a hitch.  In fact, it was an amazing day.  Ty ate a total of five chicken nuggets today, three yogurt smoothies, one-half turkey roll up and a couple of lollipops.  This is about ten times more than he has eaten in days.  He was happy all day, and we had loads of fun.  We went to the park today and brought his kites, airplanes, bubbles and snacks/sandwiches for a picnic.  Ty watched Gavin running all around on the playground, which worried me a little, but instead of looking sad or envious because he wanted to do the same... he was excited and asked me to help him climb and swing and slide.  It was awesome.  He had physical therapy at home later today, and he was fully engaged the entire time.  I built a racetrack for his Hot Wheels this morning and the PT thought it would be a good idea to let him play with it and chase the cars around the house, practicing his walking and bending down to pick up the cars.  He did great!  He was so pooped, he needed a nap. 

Gavin did, too.



Now please excuse me while I curl up next to him to do the same thing.  I can't wait to get some sleep tonight.  I hope I can fight the insomnia without jumping at Ty's slightest movements throughout the night in fear that he is getting sick.  I think it's going to take a few days before I know what to expect, and until then I am going to have a hard time sleeping when I am so unsure of how these new meds are making him feel.  Fingers crossed for at least a few hours of rest and relaxation.  And, for Gavin to sleep through the night.  Boy did he fight us going to bed tonight, but so far so good.  All is quiet and peaceful at the Campbell's :)  Goodnight and thank you so much for your love and support.  

3 comments:

  1. What gorgeous boys, little sleepging angels!

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  2. Wow Ty Looks SOOOO GOOD!!! You almost cant tell them apart in while they slept, such cuties! Ty is my HERO, Keep eating, I am so loving those fuller cheeks!!!
    Leslie

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  3. Cindy & Lou,

    Look at those handsome boys!!! :) I truly love the picture of Ty on his power wheels, he is getting so strong.

    As far as Gavin, I know you are probably in full blown panic mode, but I am sure he is fine. However, to ease your nerves, you may want to consult with his pediatrician!

    As always, I am praying for you guys!!! Team Ty always!!! :)

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