Wednesday, August 24, 2011

A new protocol for Ty - THANK YOU CHRIS!

Today we went for our weekly visit to the hospital and Ty is still doing well.  His blood work was perfect, but I’m sad to say he lost some weight.  Almost 2 pounds down, but his nurses suggested this may be because he is so much more active these days (which is true).  I just need to get a bit tougher with him about eating.  If he won’t eat better, I am going to start putting him on a belly tube feed at night so he gets the extra calories he needs to bulk up.  In the meantime, the team prescribed a medication to stimulate his appetite.  We'll see how that goes.

We also had a nice, long discussion with Ty’s doctor about next steps.  I am so happy to report that we have a new plan of action as opposed to the “wait until something happens” protocol that has been in place since Ty’s last surgery.  I don’t mean to sound as though Ty’s docs were doing him an injustice by not being more aggressive with the drugs we have been using since his cancer metastasized.  We had no choice but to wait for his bone marrow to recover, especially since he was neutropenic again just under four weeks ago.   I just hated knowing that the chemo we have been using over the past month (Avastin and Temodar) aren’t clinically proven to kill the cancer… they were only intended to prevent it from spreading until we had a better idea of next steps.

A great friend, Chris - who is extremely knowledgeable about the various oncology drugs available and clinical trials that are underway - was kind enough to meet us at the hospital and join our discussion with Ty’s doctor.  He has been doing a lot of research on Ty’s cancer and reaching out to various medical professionals on our behalf.  He has been an angel to us.  Unfortunately, Ty had a lot of demands so I wasn’t able to participate in much of the discussion, but Lou says it was one of the best meetings we’ve had about the details of Ty’s care in a long time and that everything was very positive.  I will share more details about the drugs we will be administering in upcoming weeks, but the bottom line is that we have a 27-week plan where Ty will be ingesting oral chemotherapy meds on a daily basis.  His bloodwork will be taken on a weekly basis and the drugs will be adjusted constantly in order to make sure his white blood cell count doesn’t drop to a dangerous level (in other words, we don’t expect him to become neutropenic often).  However, we will not begin this treatment until we have another MRI so we can be sure we are still dealing with microscopic disease.  If there are any additional tumors, our course of action will be completely different.  The MRI will be scheduled for sometime next week so please stay tuned on that… I will be asking for everyone to double-down on prayers and positive thoughts on behalf of Ty :)

Chris had nothing but good things to say about the new protocol that our doc has in place pending Ty’s MRI, and he also shared the details of an overseas study that had some very promising results with three children whose situations were similar to Ty’s.   In fact, there are a few decent studies that show positive results for brain tumor vaccines that we are exploring.  Unfortunately, in order to pursue this type of immunotherapy we need to have fresh, flash-frozen tumor tissue.  We were able to track down whatever has been stored from Ty’s previous surgeries, but unfortunately the samples weren’t large enough to create an experimental vaccine for Ty.  This approach is something we will pursue more aggressively should Ty’s MRI show any new lesions (which it won’t).  In the meantime, Chris has been SO helpful in getting all of the necessary paperwork in place and looking into options for grants and such so that if the time comes we will be able to jump on something like this.   Thank you, Chris, for taking us under your wing.

I realize this is a lot of detail, but I wanted everyone to know where we are at.  27 weeks sounds like such a long time, but when I say six months it seems so much easier to imagine.  No big deal, we can totally handle that.  The bigger question is, okay, what happens in six months if it IS working?  What happens if it ISN’T?  Truth is, because Ty’s cancer is so aggressive, there really is no end in sight as far as treatment is concerned.  If the new plan works, we will most likely keep on doing what we’re doing.  If it doesn’t, maybe we will be participating in one of these vaccine trials.  Who knows.  All I know is that I am happy we are moving forward with a more aggressive regimen to help Ty beat up his cancer.  Go Ty!  For your amusement, these are the passport photos I took of Ty and Gavin just in case.  I know it seems crazy, but we just want to be prepared to go anywhere/do anything for the best treatment options.




XOXO, with all of our love. 

5 comments:

  1. What a promising post! Joyful!!

    Great pictures of Ty and Gavin...they are too cute! Ty looks SO healthy! It is just amazing what is happening and is GOING to happen in Ty and your families life. I just know it!

    Love,
    Jan
    Georgia

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  2. I can't even express in words how excited and happy I am for Ty. He is looking amazing, I'm so happy to hear that his bloodwork is great. God is working a miracle in Ty!! Thank you for all your updates, youre a great mom! I look forward to reading about Ty and Gavin everyday!

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  3. Cindy & Lou,

    Wow, I had a lot of catching up to do!!! I am happy that things are going so well for you guys!!! Go Ty ;)

    I wanted to say one thing to you about Ty's eating, I know it is hard and you don't want to let him eat whatever he wants, but. . . I hate to say it, Alex will be 4 November 2nd, and I practically let him eat whatever, as long as he is eating! I know I sound like the worst mom in the world but it is true. There was a week were he only wanted spaghetti and chippys and I let him have that, and sometimes we have brownies for breakfast! :( Bad Mommy I know but oh well, as long as he is eating right. I usually bring Alex to the store so he can pick out what he wants to eat, (my Nicholas is not a picky eater) and that used to work until the Cars 2 movie came out and he wanted everything that had the picture of Cars on it, and wouldn't eat half of it! Im sure he will gain weight back! Can he have Milkshakes? Because I know a milkshake is very high in calories and fat and kids usually love them!!!

    I cant wait to hear about the success of the new treatment!!! Go Ty! Pictures are great and I am about to watch Ty's video!!

    Have a great weekend, and stay safe! Hurricane Irene is heading our way!!!!

    Joy Marielle
    Baltimore, MD

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  4. loving that lil Ty is doing so well and I swear I pray for him all day long, everyday!!!! I pray to God that he heals COMPLETELY and that cancer NEVER returns to your precious lil Ty!!! I love reading your posts and updates everday Im thankful to you for letting us know whats going on with lil Ty. I adore all the pictures you share. Hope you will keep posting daily (even if its short)and more pictures!!! Love lil Ty and wish and pray for only wonderful things for your AMAZING family.....praying,praying,praying

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  5. You're all always in my prayers! I'm glad the dr's are in agreement on a more intensive approach and that u have that angel Chris by ur sides. Having support like him with the knowledge u need is a true blessing. Praying for solid, wonderful MRI results as well! soso

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