We almost never check to see how many visits Joel’s site has, but since his video came out on Friday, we had 4000 visits in one day. It is a little surreal for us. Since so many new people are here looking at Joels story, I thought I should give a quick history, (especially what has happened with Joel since the MRI in November that was shown in the video.)
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We have kept this website about Joel since he was first diagnosed with an AT/RT brain tumor, right after this first birthday. With an AT/RT, even one recurrence leads to death. Joel has had six recurrences. Every time that Joel responds to palliative medications (medicine that treats symptoms or alleviates pain but does not cure, given at the end of life to improve quality of life only) our doctors are baffled. They know that it has been two years since Joel has been given any kind of treatment that should lead to remission. In the past two years, we have had many unexpected months of remission. We have been told three times now to prepare ourselves for Joel’s quick death.
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The MRI in November was hard for us. When we spoke with our neuro-oncologist he told us that not only was the tumor very large, it had grown very quickly. He said this represented a new stage of the disease and that Joel was in the downward spiral. He told us Joel would not see extended periods of remission again like we had seen in the past. Within a few days of the MRI, Joel stopped walking completely. He was in intense pain. (With all of the past recurrences Joel had never been in pain like this.) We started out giving Joel tylenol but quickly had to increase it to morphine and then fentanyl patches that gave continuos pain relief.
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I asked an anesthesiologist who was an expert in pain relief, “If the radiation works, and the tumor shrinks, how will I know when it is time to decrease the pain medication? I don’t want Joel to be over medicated.” He looked at my sympathetically and matter-of-factly told me that he did not think Joel would ever come off of pain medication. For a while, it seemed like he might be right. No matter what medicine we gave Joel, he got worse. He was angry, (partially from steroids he was on, but also from discomfort.) It felt like we could not keep up with the pain and Joel kept hitting his head on things out of frustration, scratching people in the face, biting people. It was so miserable. He stopped crawling. He did not play at all. He stopped making sounds and laughing. It was heartbreaking.
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We agreed to treat the tumor in his spine with radiation to keep him from permanently losing his bowel and bladder control, and to try to alleviate the pain he was feeling, since the nerve endings at the base of his spine were encased in tumor and irritated from the pressure. We agreed to three weeks of radiation, (the radiation began before Christmas and ended after New Years, which was a drag.) Two weeks into the radiation treatment, the doctors asked for a new MRI because Joel was in so much pain. (I suspect they were concerned that the tumor was growing despite the radiation and had grown enough that we should stop the radiation treatment all together.
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Then, two days before Christmas, Joel was better. He started crawling. He began to play with toys, laugh, and babble. The day after Christmas when we went in for radiation they did a rough CT scan to make sure the radiation beam was lined up correctly, and they could see the tumor was shrinking. They canceled the MRI, because it was clear Joel was improving. We weaned Joel off the pain patches. He finished radiation and came off the steroid. Now Joel is walking again. He is happy. He plays with his brother and he has no pain at all. We had an early MRI in February that showed the tumor in his spine is about half as big as it was to begin with. The radiation he received could continue to shrink the tumor for a few more weeks. We did not look at his brain in the February MRI. His next MRI is Monday, March 11th, it will be of the full brain and spine and we will know more then.
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We have had so many ups and downs. We have seen really cool miracles, the best one being when a spinal fluid sample showed clumps of cancer cells, and ten days later, with no treatment in between, a new spinal fluid sample was completely clear of cancer cells. Mostly what we experience though is that just when things look really bad, everything turns around, Joel gets better instead of worse, and the medical staff is shocked and happy. That is why we have hope in the middle of terrible news. For us, at least so far, bad news had signaled that a miracle is on its way. We keep praying for Joel. We keep writing about what happens. Our heart is to share our lives so people know that we just love God and trust Him. We do not have perfect faith, but we try to be consistant. We keep praying when things are hard, we praise God in the middle of struggle and we show off His goodness whenever we can. Mostly, we never assume its over, we always assume that God is not finished yet.
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Joel today at the winterfest downtown.

Joel today at the winterfest downtown.

Comments

There are 3 comments for this post.

  1. Molly Kluck on February 9, 2013 6:54 pm

    I’m praying everyday now that I’be found out about Joel. Your family is in my heart and I have faith that God will make everything right for Joel. God bless you!

  2. Stephanie on February 11, 2013 11:36 pm

    Thank You for sharing this precious little boy’s story. Your whole family will be in my prayers. I also wanted to comment on here about a piece of the video I just seen telling Joel’s story and about something that was said by his dad. “…So I think even if Joel doesn’t change the world. He has changed me.” I believe he is changing the world. Every person who sees this blog and the video will be forever changed for seeing that precious baby and all the things he has endured through and through God’s love has overcome. He is an inspiration of what living in the belief of God and giving it over to God can mean. And while I maybe naive, I honestly believe that anyone even if they may not be a believer can see how wonderful those miracles are and that changes the world. Maybe not in huge ways but in important, precious, small ways that never fade and never go away. I wish you and your whole family the best and will pray that God will keep blessing your family.

  3. Michelle C on February 12, 2013 1:45 pm

    Joel, you rock! God , you are the rock!

    Thanks for sharing your story.

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