Off to Mayo …

Many people have asked, “when is Joel going to Mayo? What are they going to do?” I haven’t been so great on keeping up the blog. Sorry about that. So Joel just left tonight and is headed to Las Vegas where he is spending the night with our friends, Jason and Natalie. Then on Monday, Jason and Joel head down to Scottsdale. Special thanks to Jason for going with Joel as I needed to stay home with the boys for school and work. Joel’s first appointment is Tuesday at 9:00 am and he has specialists and tests already scheduled for the week. Mayo doesn’t work on the weekends, so Joel and Jason will head back to Vegas on Friday and Joel comes home on Saturday with our friend Dave who is coming for a visit. If it’s necessary, Joel will go back to Mayo the following week.

I also get asked, “What are our expectations or hope for the trip?” Well after more than two years, our hope in finding some miracle cure or treatment is pretty low. Although we do still believe God can cure him, I think it was early this year when I finally came to the reality that this could just be our life from now on. We’ve learned to adapt and cope and each day presents a new challenge. It doesn’t mean we stop looking for answers though. Some days we make it and some days we just throw up our hands and say, “We give up today”! That’s usually when I (Mom) call a 7:00 bedtime for everyone!

But we NEVER go it alone. God is always with us giving us strength when we need it and our friends and family help us more than they could ever know. Many times, I feel like a thank you is just never enough.

While our expectations may be low, we do know a few things. First, Mayo knows their stuff. Their teams of doctors look at a big picture and narrow it down from there. Last time Joel left there with about 10 to-do items, some of which they told him would be “like hell on your body.” I’m so proud of Joel to say he did almost all of them. The only thing he didn’t do was get a cpap for his non-breathing during sleep – he wanted to try stopping one of the meds that was causing weight gain first and then lose the weight in hopes to sleep/breathe better. In total, he’s lost 52 pounds! I don’t think he sleeps any better, but he does feel better with the weight. And in typical Joel fashion, he says, “Only 100 more pounds to go” (as I roll my eyes at him).

The other thing they told him to do was get off the prednisone because they could not tell which symptoms were from the medicine and which ones were from his disease. This was by far the hardest for him to do, but he made it. Our hope is that they can see things more clearly this time. And finally, Mayo has the best testing in the country. I say that for people to know that when you do bloodwork or other tests through your regular doctors, there are often false positives and negatives.

Why? Because they use generic kits that go to big labs and tests are run by machines. In what our doctor calls, “the ivory towers” (places like Harvard, Mayo, Johns Hopkins, etc,), the tests are done individually by trained professionals specifically looking for certain things. So my recommendation to people is to always get more than one opinion and try sending your blood work to another lab before taking a medication that will cause severe damage to your system.  With Joel’s compromised liver, he wouldn’t have lived long on the dosages of prednisone he was on. It helped the joint pain and swelling though. So for now, he chose quantity of life over quality.  Watching him suffer so much, I can’t say that I would have chosen the same, but I’m so glad he did. And speaking of liver, we think Mayo might want to do a liver biopsy as part of the testing, but we’ll see.

I’ll keep you all updated here as things there progress. We ask for your prayers for Joel and his health – that the doctors see things clearly and better treatments can be found. Or as always, 100% healing! Thank you!


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