Saturday, January 12, 2013

Friday, January 11, 2013

Yesterday, we got to clinic bright and early for the fasting labwork ordered by the endocrinologist. Then we hung around until it was time for the MRI. First Collin asked me if we HAD to get his pictures taken (that's how I explain the MRI to him), and then he told me he didn't WANT to get his pictures taken. Then he kept making sure Bill and I would be there with him when he went to sleep and when he woke up. When it was finally time for anesthesia, Collin was calm and cooperative. In some ways it's easier now that he's older, because I can explain things to him in simple terms so he understands and knows what to expect. Of course he can also more easily tell me he doesn't want to do something, which is hard when there's not a choice.

The MRI went smoothly, and Collin came out of anesthesia fairly quickly and easily. While we were waiting for him to wake up, Dr. Comito came to tell us that although not all of the images were read yet (an MRI of the brain and spine is made up of literally hundreds of pictures, so it takes time to get them and read them), the images of his brain looked good. We breathed a HUGE sigh of relief! Ironically, while Collin was in MRI, we got a call from the endocrinologist saying all of his labwork came back normal, so he doesn't need to start on oral hydrocortisone yet! For now we'll just keep monitoring him.

This morning Collin had his speech therapy evaluation. Collin grew tired fairly quickly and needed encouragement to finish the hour-long session. His speech therapist could see some improvement, but there is still a lot to work on. She will see him once a week, and will initially see him for 45 minutes due to his fatigue.

After speech therapy, we went home for lunch, and Collin took a little nap. Then we went back to Hershey for his neuro-oncology clinic appointment. We met with two of the other oncologists and the neurosurgeon, who reviewed the MRI report with us. There is no evidence of active disease. The areas where the relapses were do not enhance (show up brightly), and there is decreased blood flow to those areas as well (tumors need a blood supply to grow). The neurosurgeon mentioned how Collin seems to have this "life force" in him because he keeps managing to "bounce back" from every setback he's ever had, and how the person least affected by everything he's been through is Collin himself. Tonight, I'm just so incredibly grateful...for another three months to live "normally" and watch Collin continue to move forward, for the amazing doctors, nurses, and therapists who take such wonderful care of him, and the constant love and support from our family, friends, and so many others around us. We are blessed.


  1. So happy to hear your good report!! What a relief!

    My 3 yr old son also has medulloblastoma (is being treated at MSKCC). I stumbled across your blog when googling 3F8. Anyway, I know all too well about these stressful MrI days... So happy for you all. Now you can breathe a little easier. Enjoy your time with your family!

    1. I will keep you in my thoughts and prayers! There are a lot of great online resources for info and support. If you are interested in any of them, please let me know! You can email me at, or find me on facebook through Collin's facebook page (search facebook for CollinCureageous). Please keep in touch!

  2. I am praying for you all that this is the end of this chapter and beginning of a new one. he is a beautiful little guy <3

  3. That is great news for Colin. I have been reading his story for a while now. I go to PSU and just stumbled upon it from Emily Whitehead's page. He is so adorable! I have a 1 and 3 year old and everytime I see kids with cancer it just breaks my heart. I want to tell everyone about it and raise more money for it.

  4. How awesome for good MRI results!!

    I came across your blog from a post by Peach's Neet Feet on facebook. My 4 year old little girl just recently relapsed with a supratentorial PNET and is getting ready to start her second clinical trial in two weeks.

    I know how much relief good MRI scans can bring and I'm so glad ya'll got good news! I also just started blogging about Alexa to keep everyone updated and to raise awareness if you'd like to check it out!

    I'll keep praying for good news for you guys!

  5. Hi there!
    Thank you for sharing about Collin's journey and fight, he is clearly so brave and such a wonderful little boy. I am so glad that his recent scans were good, and I sincerely hope they are clear forever more!!
    I wanted to share some information with you, or just some food for thought... my mother was diagnosed with cancer about two years ago, and after that, we both researched like crazy, including many many alternative cancer treatment methods. I realize of course that it can be very different for a child, especially one so young, but I truly urge you, in case of a relapse (God forbid), for further prevention, or just to educate yourself, on alternative methods of treatment. My mother decided not to do any chemo or radiation, and has become cancer free purely through taking herbal supplements, completely changing her diet, and other things.
    I realize that looking into alternative methods can seem daunting and overwhelming, as it's already hard trying to keep track of the information that comes with the conventional medicines. And of course, you have the right to choose what you think is best for your little boy and for your family, but in my vast research of it, I have found that there are quite a few things out there you can try that do not cause harm, have been proven to help, and are not awful chemical drugs. Many of these things can be done safely *along* with the conventional treatments, for example, some are known to make going through chemo easier and safer, etc.
    Many doctors are not educated in the alternative methods of treatment, and will usually tell you not to try anything. But please, I urge you just to research that area, read about others' stories, and decide for yourself. There ARE other ways to treat cancer than just the traditional methods!! (Personally, I believe that in today's medical world, although there are many many drugs out there that can save lives, the majority of the drugs that are prescribed and used just treat the *symptoms* and not the *cause*. Alternative methods help get to the root of the problem.) Yes, chemo has absolutely helped to cure cancer in some cases, but at what cost? Making poor children and people sicker first with multiple complications. Just know that you have other choices should you wish to pursue them.
    I have included some links below to the sorts of things I am talking about. You can of course feel free to ignore all of this, but I know that at least for me, when it came to cancer, I wanted to know all I could and then decide for myself. Of course, please remember to be careful about filtering what information you find- there are a lot of people out there making bogus claims and trying to make money... you should never have to pay money just to get information!!
    I wish Collin all the luck in the world, and I am sure that he will have a long, wonderful and blessed life!